Part III - Disseminating, Implementing, and Putting into Practice the Right to Science

11 “Fight the Fear with the Facts!”

Ranga Yogeshwar *

“We hold these truths to be self-evident, that all men are created equal.” These words mark the beginning of the Declaration of Independence of the United States of America. What is remarkable here is the formulation of “self-evidence” as an invitation to a social consensus that should be accepted by all parties. It is the basis of our democracy and a central element of the Enlightenment. Science has also firmly adopted this element within its own universe. In a complex system of peer reviewing, transparent reproducibility of results, and disclosure of its methods, a resilient process for scientific knowledge has emerged. Today, facts are based on countless tests and critical arguments within the scientific community and mark the result of an immense distillation process in the common search for truth. This well-established approach is self-evident to all participants. Within our scientific world there is consensus on the grammar of this methodology.

However, the dissemination of alternative facts has significantly grown as an increasing number of people have access to multimedia channels and the opportunity to post and broadcast their views. Therefore, we are currently experiencing a growing disregard for established scientific facts and even face questioning of the scientific system itself. The climate debate is a particularly powerful example of this. In their Consensus Handbook published in 2018, the authors note a remarkable gap:

Despite many studies confirming the overwhelming scientific consensus on climate change, there is a large gap between the 97% consensus within science and the public’s perception of the consensus. On average, people assume that only about 67% of climate scientists see humans as the cause of global warming. Even more worrying: only 13% of Americans know that the consensus is over 90%. This misjudgment is not only true for the general public. Even many science teachers are not aware of the consensus. The unfortunate consequence of this is that many teachers are equally opposed to current climate research when it comes to climate change.¹

Thus, while the right of all people to benefit from scientific progress and its applications is recognized both in the Universal Declaration of Human Rights and in Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), a broad questioning of scientific unity has emerged in several societies. Science itself is the focus of criticism and is confronted in many places with doubt – from climate sceptics to vaccination opponents, and from conspiracy supporters of chemtrails to citizens who turn their backs on classical medicine and follow obscure miracle healers.

The vehemence of this rejection of science has increased to such an extent that even scientists themselves are now actively raising their voices: On April 22, 2017, I engaged in the March for Science in Berlin. Similar demonstrations also took place in other cities. Some 11,000 people, including several presidents of German science organizations, the Mayor of Berlin, and many impassioned students, spoke out against alternative facts and in favour of a fact-based policy. As we walked along the avenue Unter den Linden towards the Brandenburg Gate, I realized how absurd the scenery was: in the midst of an enlightened industrial nation embracing the fruits of science, we had to demonstrate for the most elementary principles of evidence through scientific facts!

But how could this discrepancy occur? What factors led to this growing scientific scepticism? What role does the media play and is science itself partly to blame for this development? In this chapter, I would like to highlight some aspects of this apparently disturbed science communication within a greater context.

11.1 Our Perceptions Do Not Correspond to Reality, But Are Increasingly Shaped by the Media

In 2017, Sinan Aral and his colleagues from the Massachusetts Institute of Technology (MIT) conducted a study² that analyzed how news spread on Twitter between 2006 and 2017. Their findings were worrying: on average, news that had been verified³ as true took six times as long to reach 1,500 users than news verified to be false, and furthermore, false claims were shared 70 percent more often than correct information. “Falsehood diffused significantly farther, faster, deeper, and more broadly than the truth in all categories.” The most striking thing was that the conventional wisdom that bots accelerated the spread of falsehood more than humans was wrong: “humans, not robots, are more likely responsible for the dramatic spread of false news.” “Fake news” generates higher instances of emotional response, for example surprise or the perception of novelty, and thus substantially boosts click rates. In an interview with Sinan Aral, he explained to me that online portals financed by advertising in particular intensify this process, as they directly profit from the higher click rates induced by this cognitive effect.

The visibility of the respective content depends on the economic rules of a platform: while Facebook, Google, YouTube or Twitter may appear to be free of charge for the user, their business model focuses on their monetization as advertising platforms. The users themselves are the products as their data provides the basis for targeted advertising. The primary intention of social networks is therefore not mutual exchange and “connecting the world” as is often claimed, but rather to maximize the interaction of the user with tailored advertisements. Content that is frequently shared and viewed is automatically prioritized by algorithms and thus becomes even more visible.

Click rates, along with viewing duration and other parameters such as interactivity, flow into an algorithm and thereby determines the placement of the respective content. For YouTubers and Influencers, posted videos are even classified into different lucrative categories by algorithms. Depending on the content, you earn different amounts for the same number of clicks.

This focus on click-through rates automatically becomes an information filter. The focus is not on the content itself or its social relevance, but on a setup optimized for the algorithm, with the goal of maximizing advertising reach and thus the generation of higher income for the influencer. The grammar of these platforms determines the content. What began years ago in classic television media with an optimization of the audience flow has now developed into an art in its own right: search engine optimization (SEO), channel optimization, traffic control and keyword selection determine the reach on the net and thus the visibility of the information. All this has as its central purpose the maximization of user loyalty and retention time, since this forms the basis of the underlying business model of these platforms. The intensity of content-generation also plays an important role: Those who post only sporadically are downgraded by the algorithm and eventually end up in digital obscurity. Continuous activity, on the other hand, increases the reach of posted material. Out of this constraint, the content profile changes. The user does not post because they have something specific to say, but rather because the algorithm demands they be active. Through automatic reminders, the user is constantly encouraged by the platform to update their posts. The numerical recording and evaluation of page views, likes, reach, and responsiveness further fuels a spiral of excitement. Everything needs to be fast hence there is no time for pausing, questioning, and reflecting.

Interestingly, all this lacks any trace of transparency: companies like Google, Facebook, and Twitter do not disclose their internal modus operandi and so, even famous YouTubers and Influencers operate within a space that is digitally opaque. Instead of working with clear criteria and facts as a basis for the decision processes concerning the classification and evaluation of their videos, decisions are communicated to them as a result of the “almighty algorithm.” No outsider knows the underlying mechanisms of these algorithms. This means that the world’s largest video network lacks a culture of responsibility, openness, and accountability. There is no true communication with responsible “editors” and it is remarkable that the scene has not yet publicly protested, although a large number of YouTubers criticize this “algorithmic” handling. What would happen in the real working world, if employees without transparent criteria and rules were paid differently according to almost arbitrary arguments?

11.2 The Inscrutable Algorithms Increasingly Determine the Content, But So Far, We Have Dealt Too Little with the Consequences of This Changed Grammar

Even in the classical media world, content has been used as bait for advertising, but this interaction has thus far been subject to clear rules: Advertisements had to be labelled as such and journalistic work followed a clearly formulated code, rooted in principles such as truthfulness, due diligence, and the clear separation of advertising and editorial work. This agreement provided the freedom for journalistic independence despite the commercial basis of a newspaper. Although advertising revenue indirectly financed journalistic research, the editorial part remained largely unaffected.

In the new digital world of communication, these protected information spaces have disappeared. The celebrated Influencers are essentially masters of surreptitious advertising, for this is precisely where their business model lies. The world of colorful irrelevance is soaked in advertising impulses. What matters are the number of followers, and the larger the community, the more potent the advertising effect in the selected target group. In order for this to work, the algorithm has to be fed as optimally as possible. The medium shapes the content as only such content that fulfils the logic of the algorithms has a chance of reaching a wide audience. Therefore, content is determined by the commercial objectives of the algorithm’s coders and not by any journalistic criteria such as social relevance. Modern media focus on a new kind of business based on excitement.

Players such as Google took over the classical advertising business and professionalized it. The precise crystallization and addressing of target groups, the numerical accuracy of campaigns, the integration and targeted forwarding of buying impulses, the timely evaluation of advertising activities – all of these are not commonly offered by classic media. The user reveals their activities and interests and their data influences the information streams they get to see. This feedback automatically leads to the isolation and profiling of the individual. How far we have come in terms of targeting has been recently shown in a revealing experiment: As part of its “Privacy Project,” the New York Times bought targeted Internet advertising.⁴ The newspaper “picked 16 categories (like registered Democrats or people trying to lose weight) and targeted ads at people in them.” However, instead of trying to sell products or services, they “used the ads to reveal the invisible information itself.” For example: “This ad believes that you are male, currently paying off your debts, but often shop in luxury shops.” The fine granularity of data captured allows, when combined with predictive algorithms, the ever more precise addressing of the individual, despite promised anonymity.⁵ This “surveillance capitalism”⁶ is the core business of digital platforms. The prediction of the user’s coming consumer desire becomes more and more accurate through better models and what, at the moment, still appears to be pure observation can easily degenerate into active manipulation through interspersed information.

11.3 These Intelligent Media Do Not Inform, But Change and Shape the Behavior of Their Users

What emerges here is a widespread attack on free will. The consistent application of these tools within the political arena could end any hope of free democracies. Internet platforms are becoming more and more powerful and at the same time their traditional media opponents, the free press, are dissolving. The newspaper and magazine industries are facing a dramatic decline in revenues and circulation figures. Larger publishers are securing their own survival with new digital business models, decoupling the old advertising business and setting up separate commercial platforms, job exchanges, real estate portals, or news aggregators whose algorithms reflect the individual interests of users. This change threatens not only the existence of the traditional media industry, but also that of critical journalism itself as the digital world currently lacks resilient business models for independent journalism.

11.4 Journalism Is Reduced to a Commercial Excitation Business

In the current transition phase between old and new media worlds, the categories of the digital platforms also infect the working basis of traditional media. We can all follow the fierce struggle for existence through circulation and quotas, which results in an increasingly hysterical press. The endless scandal-mongering and sensationalist headlines are like a last-ditch attempt to make oneself heard within the media noise. Once a theme becomes viral, it is taken up by everyone in a reactive cycle and drama-fueled feedback-loop. Editors break with the norms of classical journalism: In news programs, reports are accompanied by music and artificial moods are created through the use of slow motion. The former president of the German Bundestag, Wolfgang Thierse, put it aptly: “The talk shows are an essential part of the hysterical political communication in Germany. The focus not only on topicality, which is correct and understandable, but also on the aggravation in the title and in the moderation – fear, negative expectations, anxiety. That doesn’t promote and alleviate anxiety and fear, that doesn’t promote and fight populism.”⁷

A study of the 141 German political talk shows in 2016, where German media constantly talked about refugees, showed that other relevant topics such as climate change or renewable energy concepts were not taken up in a single round.⁸ However, now, only three years later, the climate debate is vigorously discussed across all forms of media following the global “Fridays for Future” protests.

The focus is no longer on content, but on attention. The guiding principles are not facts or social relevance, but reach, hit rates, and aggressive click-baiting.

11.5 We Underestimate the Effect of This Excitation Business on Our Perception

One well known example from science is the media coverage of animal experiments.⁹ Emotions always win. The British market research company Ipsos MORI conducted a survey compromising 25,000 people from 33 countries in order to find out how the perceived reality of citizens differs from the actual facts in the country.¹⁰ People in Germany, for example, estimated the percentage of migrants living in their own country to be twice as high as it actually was, whereas, in contrast, they underestimated the proportion of overweight people. When asked what proportion of children and young people under the age of fourteen were overweight, the answer was half that of the actual figure.

The open social networks are a tempting invitation to populists and conspiracy theorists. The Polish sociologist and philosopher Zygmunt Bauman describes this historical transformation process as liquid modernity:

Social media do not promote our capacity for dialogue because it is so easy to avoid controversies … Most do not use the social media to promote community, not to broaden their horizons, but on the contrary to hide in a comfort zone where they only hear the echoes of their own voice, and where everything they see is reflections of their own faces.¹¹

This shift in priorities leads to a decoupling between the media world and reality. The perceived truth is more important than actual facts; the perceived will of the voter wins, even if this is perhaps only a wish far away from reality. When politicians intend to put a topic on the agenda, its media effect is explored first. Subsequently, we observe how the political agenda is increasingly dictated primarily by its media impact and not by the necessity of its content. How dramatic this situation has become can be seen, for example, in the absurd buckling of the Japanese government in the context of cervical cancer vaccination. The media power of the Japanese vaccination opponents led to a decline in the vaccination coverage from 70 percent to less than 1 percent.¹²

11.6 “Digitality” and Reality Start to Mix

The appeal of the digital Eldorado lies in its latency-free response time, the complete dissolution of geographical distances, and its promise of abundance and augmented reality. Here, one moves from one impulse to another and the digital space turns out to be the breeding ground of a new world dynamic demanding constant innovations and surprises. This unprecedented attraction leads to a novel kind of global migration to a “digital continent.” Some see this migration into the digital world as running away from reality; an escapism from a real world replete with shortcomings and threats. Our attitude toward our personal lives is increasingly determined by the digital world. It is not only communication and information gathering that are organized by search engines and platforms. The net is increasingly becoming the kernel of our lives and the cosmos of our dreams. The focus of our consciousness is shifting into the digital world where profiles are the emerging substitute for the actual human and likes are becoming a barometer for one’s attitude to life.

The current German public television (ARD-ZDF) online study states in its 2018 report that the average daily Internet usage time of 14-year-olds and older has now grown to 196 minutes per day. In the younger age group of 14- to 29-year-olds, the average daily Internet usage is just under six hours.¹³ In this group alone, the daily time for individual communication – chatting, emailing, WhatsApp or other messenger activities – adds up to 152 minutes.

As you are reading this sentence, over 200,000 Facebook posts and 22,800 new tweets are streaming online.¹⁴ Facebook users watch one billion videos per day. Every second, 28,000 Instagram images are liked and on WhatsApp alone, more than 27 billion new messages are exchanged every day. These figures reflect the global intensity of this shift – no other medium has achieved such a high level of social penetration in such a short time.

In addition to communication, more and more processes are shifting from physical space to the digital universe: shopping, partner selection, booking travel, paying bills, and medical analyses, digital images of our reality are being created everywhere. This digital migration subsequently leads to changes in behavior, as “digitality” and reality mix. One example is the change in physicality: the portraits we see on Instagram or Facebook are often embellished by apps such as Facetune¹⁵ which can smooth wrinkles and skin spots, retouch body shapes, and bleach teeth using algorithms. The posted images are thus beautified artefacts that unfold their normative power over time. Here, too, the flow direction is reversed: real people attempt to emulate and correspond to their digital alter egos. We want to look like digital avatars. Actresses eliminate their wrinkles, politicians straighten their teeth, and newscasters dye their hair, because the visual impression is becoming increasingly important. If we compare the political campaigning of the seventies with today’s electoral campaigns, this change is obvious as the portraits of the candidates are now being retouched and smoothed in such a way that they look completely artificial. Here, a new culture of artefacts is established, which unconsciously extends to other areas as well.

While classical media still have to select their published content rigorously due to limited broadcasting space or newspaper pages, the digital world is free of these restrictions. The media space seems to be boundless and holds space for everything from potato cultivation, quantum physics, UFO sightings to political statements. Curation is almost completely eliminated, making the digital media space a gathering place for everything and everyone, superimposed by the dissolution of authenticity. Through the use of modern AI techniques, the production of “Deep Fakes” are now possible: artificial images and videos are already produced in such a perfect way that distinguishing between real and fake is almost impossible.

11.7 Fake Science

The increasing use of the word “authentic” is ultimately a sign of this emerging culture of artificiality. Over time, we become accustomed to transforming reality to our taste. So why not also adjust the universe of scientific knowledge according to our needs? Tobacco companies present studies minimizing the risks of smoking in pseudo-journals; pharmaceutical companies praise the effectiveness of their medicines; climate “experts” provide alternative explanations for global warming; and scientific institutes present a novel “dual-fluid reactor” that supposedly meets high safety standards as well as economic goals.¹⁶ There are numerous specialist conferences, institutes, and purported experts whose publications and websites are characterized by the same patterns that are also used within “serious” science: they quote each other, use complicated technical terms, and list their merits. A genuine expert may notice the bluff, but to the layman there is no comprehensible difference and so what we experience is a questionable fusion of fake and real science.

In 2018, research by journalists from Westdeutscher Rundfunk, Norddeutscher Rundfunk, and Süddeutsche Zeitung (WDR, NDR, and SZ) revealed how dubious journals are diluting quality standards of scientific publications such as anonymous peer reviews.¹⁷ Open access procedures and a large number of predatory journals, as the librarian Jeffrey Beall calls them, have changed the current fee model of scientific journalism.¹⁸ Traditionally, readers financed printed journals through their subscriptions. With electronic publishing, an increasing number of journals are asking authors to pay and posting their articles on the Internet free of charge for the reader. The open access model has its advantages, because in principle it makes research accessible to everyone. Poorer nations in particular benefit from open access to up-to-date research. Most open access publications are no less trustworthy than the average of their printed predecessors, but a questionable business model has emerged from this reversal of the flow direction: In the life sciences alone, some 30,000 journals vie for paying authors. Under the general pressure to publish and the struggle for attention, junk journals are created that wave through the articles of their customers without serious peer reviewing. This system is fueled by additional drivers such as “impact factors.”

There is a remarkable parallel between the media and science landscapes, because in both cases traditional structures are being replaced by corresponding digital publication models. Editorial rigor begins to fade out and, in both cases, underlying commercial criteria become the driving force. As a result, the citizen is wrapped in a fog of questionable information and not in a position to distinguish between the relevant and the irrelevant or to classify news-streams accordingly. While for a long time, the procurement of information was an important criterion for responsible participation, we are now confronted with an ocean of information such that sorting and classifying becomes the essential skill, instead of critical analysis. But how is this possible, in an environment where algorithms and commercial platforms are taking over?

On the occasion of the 70th anniversary of the Universal Declaration of Human Rights, UNESCO expressed a desire to reaffirm its commitment, mandate, and role in the promotion and protection of human rights, but when the authors of the former declaration spoke of the merits of scientific progress in 1948, there was probably still more of a consensus on what it meant. In today’s world, the term has become blurred and one would almost have to ask whether universal declarations still matter, as our frames of orientation seem to have changed. Large political parties are dissolving, classical leading media are on the retreat, privacy is being commercialized. The balance between public and privately financed research has shifted and the border between the two has become blurred.

The application of intelligent commercial algorithms leads to a social de-solidarization effect. Within the insurance industry, for example, behavioral policy pricing models have been introduced. The former “we” is shifting to “I” and fragmented societies are beginning to lose their common denominator.

11.8 We Underestimate the Effect of Complexity

Thus far, many science communicators – including myself – have been convinced that scientific literacy would automatically lead to more responsible decision-making among citizens. However, we seem to have underestimated the impact of growing complexity.

Medicine, for example, so essential to our continued health, is becoming inscrutable for most people, but so are the worlds of technology, the media, and finance. The virus of complexity has spread everywhere. No politician truly understands the details of a free trade agreement and bankers are ignorant about nonlinear derivative algorithms. Car mechanics no longer diagnose what is wrong with a car by the sound its engine makes, but instead connect its internal systems to a computerized interface. Complexity has taken on such proportions that even the most everyday items are beyond our understanding. What is hidden under the smooth user interfaces of our touchscreens is far beyond our ken. When we proclaim the necessity of public understanding of science, we ignore the simple fact that the inherent complexity of science in the modern world makes this level of widespread understanding impossible.

In our technological world of wonders, we have to trust computer scientists, chemists, climate researchers, and medical professionals. Every farmer fertilizes his fields in total ignorance of the deeper mechanisms of the expensive granulates and pellets he distributes. He, who ploughs the same soil as his fathers and grandfathers once did, suddenly falters, confronted with the incomprehensibility of his surroundings. For most people, the explosion of knowledge and innovation is felt like an act of incapacitation. Progress pushes them out of their comfort zones into a world that is deeply unfamiliar. Uncertainty and mistrust spread, and the gleam of the Enlightenment is dimming. Some desire a simple world backed by clear answers and, in their voices, we can perceive the fear-driven anger of incomprehension. They fight against their incapacitation, terrified that the future will snatch their world from them. The former rulers of the clear and comprehensible are now the slaves of complexity, the guardians of tradition have become the driven ones of a disruptive progress. The phenomenal changes wrought by science and technology have generated a growing posture of resistance within societies. Suddenly, the voices of doubters, climate sceptics and vaccination opponents increase. People yearn for simple answers and in a complex world they will believe those who promise simplicity and plausible pseudo-rationality above those who tend towards a more complex explanation even if that is the truth.

11.9 How Trustworthy Is Science?

When researchers examined the immune system of bacteria a few years ago, they came across strange, repetitive gene sequences. Over time, it became understood that similar structures existed in the genomes of many different prokaryotes, and gradually researchers began to understand how bacteria, for example, protect themselves against viral infections. But then it became clear that this system, known as CRISPR-Cas, also poses a revolutionary and simple method for gene modification.¹⁹ And with this promising potential application, the entire branch of research was poisoned overnight by economic incentives. The ongoing patent dispute over CRISPR between the Broad Institute of MIT and Harvard, UC Berkeley, and other players is a shameful example of how the scientific joy of a promising discovery can quickly lead to a bitter battle for economic exploitability. Now, attorneys, patent judges, and venture capitalists run wild with a scepter snatched from scientists.

Similar observations can also be made in other disciplines. Recently, the New York Times published an illuminating article about the salaries of researchers in the field of artificial intelligence research.²⁰ At Google DeepMind in London, for example, the annual personnel cost for 400 employees amounted to USD 138 million in 2016. That is an average salary of $345,000 per employee. Consequence: Outstanding scientists leave public research institutes and universities in order to enter the service of large and well-paid private companies. These salaries siphon talent from the well of expertise that would normally feed independent, public institutions and universities. Independent expertise is lacking from discourses considering the medium- and long-term impacts of social networks and artificial intelligence. The questioning of Marc Zuckerberg by the US Congress in 2018 was a demonstration of political ignorance in the field of social media. The questions asked revealed a shameful paucity of knowledge about a fundamental influencer of global society and a relevant and necessary debate on the application of basic democratic principles to social media platforms was ultimately derailed due to a lack of independent competence.

It is time for science, with confidence and passion, to set a counterpoint to one-dimensional economic perspectives. Scientists must insist that their findings serve the common good. If algorithms increasingly destabilize our financial world, or perpetrate inequality and discrimination, then it is for the scientific community to critically question their conduct and permissiveness and rethink the consequences of their actions. If the findings of the psychology and neuroscience disciplines are irresponsibly misused by companies for the manipulative targeting of voters, as in the case of Cambridge Analytica, then we ought to hear a clear voice of dissent and opposition from the ranks of scientific professionals and researchers. But where, within computer science, do we hear critical discussions about algorithms or the growing evaluation of big data? In these fields, it is critical that risks are examined by coalitions with interdisciplinary expertise and a social perspective.

We urgently need more reflected progress. In some areas we are confronted with questions of dual use and unfortunately, there are not only “benefits of scientific progress and its applications.”²¹ In the dawn of a new arms race, scientists could simply refuse to engage in any further research on autonomous weapons. Data scientists could question the goals of the commercial data collection frenzy, even if these questions could lead to restrictions within their own discipline. With the growing impact of science on all areas of our lives, societies must critically question the benefits and the objectives of scientific research. When science speaks of the “public understanding” of its disciplines, we should not conflate this with “public acceptance.” The right for everyone to enjoy the benefits of scientific progress and its application contains within its normative framework a right to clearly define wherein those true benefits lie.

11.10 Does Science Really Want Critical Dialogue and If So, What Is It Prepared to Do About It?

When research budgets are cut or funding falters, science likes to raise its voice. In June 2018, German astronaut Alexander Gerst started his mission on the International Space Station (ISS) and during each press event, the strictly “scientific” nature of his mission was repeatedly stressed. Here, “scientific knowledge” was used as an excuse, although there was no reliable basis for it.

Interestingly, criticism of space research is missing from the scientific world. But how different things are when people’s own research budgets are up for grabs. This was the case in 1990, for example, when the Federal Republic of Germany’s opulent space budget led to savings having to be made in other fields of research. Suddenly, there was an outcry: in November 1990, the German Physical Society published a sharp criticism of the benefits of manned space flight. At that time, there was a whole catalogue of plausible arguments against the promotion of expensive manned space flight. But was the underlying motive really a reasonable, critical discussion about the benefits of manned space flight? Did people want to set the priorities for funding according to scientific criteria in an advisory capacity? Or was it merely a matter of securing their own benefits? In the meantime, the physicists probably have enough money, and although the factual arguments against expensive manned space travel from that time are still valid, the critical voices seem to have faded. Thus, astronaut Alexander Gerst floated off on his “scientific” mission without any counterarguments.

If scientists want to argue credibly, they must demonstrate a degree of balance and rigor. They must take the floor to debate critically – also when their own interests are not the only consideration. Scientists ought to consider the misuse of the product of their own research a reason to raise their voices. Scientific knowledge shapes our technical progress, but its direction is currently set by private interests that do not always coincide with the interests of societies as a whole, and this is precisely where we need our scientific professionals to find the courage of their convictions.

The majority of digital innovations in Silicon Valley are based on lucrative business models. If these fail to materialize, usually no research will be conducted. However, there are some exceptions: In the early 1990s, Tim Berners-Lee invented the World Wide Web at the European research center CERN. On April 30, 1993, the directors of CERN declared that the technology should be freely available to everyone, without any patent claims.²² Without this remarkable openness, marked by a decisive focus on sharing knowledge and foregoing profit, the overwhelming growth of the Internet may never have been possible.

Scientists ought not to orient themselves towards the market, but instead position themselves to offer the reasonable and independent guidance now much needed by an insecure society. This important dialogue between science and society, however, also requires appropriate financial support. So far, the scientific community has seemed disinclined to do so, apart from a handful of initiatives and projects whose paltry funding is at best measured alongside the purchase price of a somewhat more expensive piece of laboratory equipment.

11.11 Communication with Citizens Has Played a Subordinate Role in Science So Far

Although there are good initiatives and some notable individual efforts, there is still a general lack of systematic dialogue focused on reliable processes for scientists and citizens jointly to discuss critical issues, even though they seem to have common goals. The Science Barometer 2018, a representative survey of science organizations in Germany, shows that for three-quarters of the respondents, consideration for the common good is among the most important qualities that a good scientist must possess. However, less than half of those surveyed (40 percent), believe that scientists actually work for the good of society.²³ According to the respondents, the principal explanation for distrust of modern science is its dependence on financial backers. Furthermore, more than two thirds of the respondents felt that the influence of industry on science was too great. If, in this context, we demand the right of all people to benefit from the advantages of scientific progress and its applications, then it is not only the ability of science to communicate and engage in dialogue that is of central importance, but also its independence.

Until now, young scientists have completed their studies without any obligatory education on the importance of, and techniques for, communication with lay people. There are no academic credits for the kind of dialogue with the public, which is frequently demanded of them. Education of new scientists simply does not focus on these issues. As a science journalist, I have spoken out for many years in favour of opening up science and, over the past twenty years, numerous initiatives have been launched in Germany. Since 2000, the Communicator Prize has been awarded to scientists in Germany who have rendered outstanding services to communicating their work or scientific issues in general to the public.²⁴ The prize was intended to encourage scientists to engage more extensively in dialogue beyond their own community. The vast majority of scientists are unknown to those who benefit from their work and rarely enter the public arena. This applies equally to young talents who now shine in scientific circles. Even wonderful public lectures by scientists ask too much of the lay person and are often aimed at the science community and not at the general public. Scientists are too rarely seen on political talk shows, for example, and thus still lack a formative impact on broad cross-sections of the population. As a science journalist, over the course of thirty years, I have had to learn how difficult it is for most scientists to communicate with the general public. Most scientists, when interviewed, fail to break down their exciting research in comprehensible words or to explain complex concepts in terms intelligible to the lay person. A developmental biologist, who was a Nobel Prize winner, was once asked by students during a public event whether it was possible to revive dinosaurs, as in the film Jurassic Park. She looked at the student and asked what Jurassic Park was.²⁵

11.12 Bottom Up

In the summer of 2004, twenty-eight-year-old Salman Khan helped his cousin Nadia²⁶ who lived in New Orleans and had problems understanding mathematics. Salman Kahn, who had recently completed his master’s degree in computer science and electrical engineering at MIT and worked for the hedge fund Wohl Capital Management in Boston, designed a small website for his cousin. Nadia was then able to enjoy a special tutoring course despite a distance of more than two thousand kilometers. Salman has a great didactic talent. Using a simple messenger program, he first produced small online sequences with explanations and tasks for Nadia. He calmly taught her how to calculate fractions, guided her through the murky depths of the search for the lowest common denominator, and explained little tricks for shortening fractions and the secret of prime factor decomposition.²⁷

As Nadia’s performance dramatically improved, her younger brothers Arman and Ali also followed their cousin’s online tutorials. Sal Khan expanded his website, bought a tablet and turned the screen into a lively blackboard where he gradually explained the mathematics curriculum to a growing crowd of students. He posted his first video on the internet on November 16, 2006. When he realized just how many people were avidly watching his lessons, he quit his job and created an informative world of online tutorials. Ten million students worldwide now use his free tutoring and can access over three thousand videos on the website of the Khan Academy. Yet Khan and his team continue to develop their learning platform. Personalized learning plans with tasks and tests make completely individual learning possible. In contrast to rigid, frontal teaching, the learning pace of the individual is also considered. Khan proved that even weak students can significantly improve their performance through the tutorials.

The Khan Academy is now one of the most successful free online learning platforms in the world.²⁸ Influential individuals like Bill Gates, as well as many well-known multinationals, have supported the expansion of Khan’s online school with generous donations. With its staff of programmers, teachers, and data analysts still growing, every lesson is evaluated and optimized. This lively site represents a revolution in the education system. In addition, there is now an abundance of excellent YouTube channels that explain scientific connections in accessible and clear ways, often beautifully, artfully, and engagingly. Grant Sanderson’s outstanding mathematics blog on YouTube, “3blue1brown,” is an excellent example.²⁹ While communication within institutional science is progressing slowly, individual talents on the Internet have uploaded or established great tutorial systems. Some of these sites have several million subscribers and demonstrate the potential for good science education.

In 2012, Harvard and MIT founded the online platform edX.³⁰ A MOOC (Massive Open Online Course), it combines lecture videos with reading materials and open forums in which learners can exchange ideas. In the first year of edX, 155,000 students enrolled, more than have enrolled at MIT itself in the university’s 150-year history. Renowned universities are contributing to the platform in greater numbers: The University of California, Berkeley, for example, as well as the TU Delft, the Sorbonne in Paris, the ETH Zurich and the RWTH Aachen.

The curriculum of edX covers over 1,300 courses and, in the virtual classrooms, students from as disparate places as Brazil, the United States, India, and South Korea exchange knowledge, form study groups, and discuss teaching materials in Skype conferences. In this the largest virtual university in human history, world-renowned experts teach. Online education is now global and tens of thousands of students from every continent take part in a single virtual course on genetics, macroeconomics, or the history of the 1854 London cholera epidemic. For developing countries in particular, platforms like edX offer tremendous opportunities as they enable poorer students to gain access to education that might otherwise be beyond their reach. Other virtual universities have emerged, such as Coursera, Udacity, and NovoEd, and it is inevitable that many more will follow.

11.13 A New Scientific Self-Image

Although the teaching of science has improved considerably over the years, a resilient and professional dialogue is still missing when it comes to the goals of research, for example, or to ethical aspects of the research itself or its uses, or to questioning scientific progress in a broader, social context. In a world characterized by wide, fast-paced, and dramatic change, science must learn to deal with the social consequences of its actions much more intensively than in the past. Ethical questions and the meaningfulness of progress will come to play an increasingly important role. The same can be said of the independence of science from economic demands. This presents an opportunity, because citizens are increasingly looking for orientation and science should be the way in which they find that orientation. Open, professional communication between science and the public should become part of a new scientific self-image.

12 The Right to Science From Principle to Practice and the Role of National Science Academies

Jessica M. Wyndham , Margaret W. Vitullo , Rebecca Everly , Teresa M. Stoepler , and Nathaniel Weisenberg ^*

12.1 Introduction

It is not primarily in the articulation of a human right that it is given life, but in its implementation. With the adoption by the United Nations (UN) of an authoritative statement on the meaning of the right to science,¹ the time is now to shift the focus of attention from conceptualization to implementation. To that end, this study moves beyond the previous work of the scientific, engineering, and health communities aimed at defining the right to science. The question at the heart of this study is whether there is potential for national academies to adopt a central role in the implementation of the right to science, serving as intermediaries to distill and frame key priorities regarding the right within their national context, and providing locally relevant and feasible recommendations for how their governments might fulfill their obligations under the right.

The “right to science” is a shorthand used to describe Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR). According to the text of Article 15, countries that are a party to the treaty (171 in total as of July 2021)² are obligated to recognize the right of everyone to “enjoy the benefits of scientific progress and its applications,” to ensure the “conservation, development and diffusion of science,” to protect “the freedom indispensable for scientific research,” and to encourage “international contacts and cooperation” in science.³ Although the language of the right specifically addresses “science,” the provision is intended to be inclusive of all sciences, engineering and health.⁴

This study represents the third stage in a decade-long research endeavor led by the American Association for the Advancement of Science (AAAS) and AAAS Science and Human Rights Coalition. The first stage involved seventeen disciplinary-specific focus groups of United States-based scientists who were the first to explore what the right to science means from the perspectives of scientists.⁵ The second stage involved a global questionnaire of scientists, engineers, and health professionals to identify regional variations in scientists’ views regarding the actions necessary to ensure realization of the right to science, as well as targeted interviews of public health professionals about the value of the right to practice.⁶ This third stage involved a questionnaire of national academies of sciences and medicine, including national young academies, in countries that have ratified the ICESCR (and for senior academies, that are members of the InterAcademy Partnership), followed by interviews with a subsample of respondents to the questionnaire.

Multiple voices and perspectives are needed in the work to realize the right to science, including not only those of scientists, but also those particularly impacted by scientific progress or its absence, such as those affected by neglected diseases, those denied the benefits of scientific progress on religious or political grounds, and all children who stand to benefit from a quality science education. The focus of this study and decade of inquiry has been the engagement of the scientific community because, as the world’s largest multidisciplinary scientific membership organization, AAAS’s primary constituents, networks, and interlocutors consist of scientists. In addition, that engagement was explicitly encouraged by the UNESCO Venice Statement of 2009 which called on “scientists and their professional organizations to manifest their commitment to the right by … participating in the elucidation of the right.”⁷ That said, for the right to have meaning in practice, all relevant communities, institutions, and authorities must be engaged to ensure the right, in its detail and nuance, is implemented and enjoyed by all.

12.2 Literature Review

The right to science was described by eminent international lawyer William A. Schabas as “tucked away at the tail end of the Universal Declaration of Human Rights,” occupying “a similarly neglected and obscure position” in the International Covenant on Economic, Social and Cultural Rights, and as a right that “has received little attention” even taking into account “the more general marginalization of economic, social and cultural rights.”⁸ The relegated importance of the right within the human rights framework is reflected in the fact that not until March 2020 was a General Comment defining the right adopted by the UN treaty body responsible for monitoring its implementation, that is three decades after the first General Comment was adopted by the same treaty body. It is also reflected in the relative lack of literature on the right to science, although an upward trend in scholarly consideration of the right is discernible as of the last decade.

In 2015, Wyndham and Vitullo identified four stages in the evolution of the literature on the right to science: passing mention of the right as it related to other rights; consideration of the right as a whole as it related to the interests of the scientific community; exploration of the right as it relates to other human rights; and “a cautious coinciding of concerns among both human rights practitioners and scientists.”⁹ In the past several years, that final strand has expanded to explore the practical significance of the right as a tool to affect change in law and practice, and to encourage and measure implementation of the right.

Building on and contributing to this final strand in the literature, collaborations with the scientific, engineering and health communities have made five substantive contributions. The first was in recognizing that the right to science “is not only a right to benefit from material products of science and technology. It is also a right to benefit from the scientific method and scientific knowledge.”¹⁰ As such, the right to science is more than a general restatement, for example, of the right to health, to water, or to the Internet, as suggested in the early literature.¹¹ Rather, science – its methods and the knowledge it generates – holds inherent value including by providing an empirical basis for laws and policies, by providing understanding of personal behaviors, and as the basis for economic growth.¹² This point is specifically acknowledged in the General Comment.¹³

The second major contribution was in the development of a conceptual framework for understanding “access” in the context of the right to science. That framework was presented as a “continuum of access,” defined at one end as “access for general public” and at the other as “access for scientists.” “A person’s position on this continuum can change over time, depending on his/her social context, interests, ability, and training.”¹⁴ To move along the continuum of access from the general public to a scientist involves not only greater participation in the production of science, but also greater risks and responsibilities, and should depend on interest, ability, motivation, and training and the judgement of scientific peers, rather than socioeconomic position or government preselection. As such, support for the notion that the right to science includes a right to participate in science is another contribution of this preliminary body of work.¹⁵

The third contribution of the preceding work is that the right to science, though only using the language of “benefits” and of “freedoms,” must be “exercised in a manner consistent with scientific responsibility.”¹⁶ Such responsibilities are both internal in nature and align closely with ethical standards of practice as defined in most scientific disciplines, but also include responsibilities aimed at the larger community, or the “social responsibilities” of scientists, as recognized in the UNESCO Recommendation on Science and Scientific Researchers (2017) and by leading scholars in the field.¹⁷

Finally, previous research engaging the scientific community globally has demonstrated that the evolving meaning of the right to science, particularly the benefits of science to society and the government actions required to support the advancement of science, are generally shared by scientists across all regions of the world.¹⁸ However, there is global variation across disciplines about the benefits of science to society, and the government actions that scientists in industry consider to be of most value are distinct from scientists in other sectors.¹⁹

Although the UN process to define the right has only just come to an end, literature on implementation of the right – how it could be achieved in specific domains, and how to measure implementation – is growing. For example, since 2016 the Luca Coscioni Association, together with the International Human Rights Clinic of the Loyola Law School, has developed reports on specific legislation and judicial measures that could be taken to implement the right. Topics of focus include access to in vitro fertilization,²⁰ and abortion and contraception.²¹ In addition, the Association has developed a set of preliminary indicators by which to measure realization of the right along five dimensions: access to benefits; opportunities to participate; scientific freedom; enabling environment; and international cooperation.²²

The shifting emphasis in the literature from conceptualization to implementation suggests growing consensus around foundational concepts at the core of the right. It also suggests that a pragmatic realization is emerging that only through testing the receptivity of domestic legislative bodies, national and regional judicial bodies, and UN treaty bodies to certain interpretations of the right will progress in its implementation in practice occur. It is to that end that this study examined the actual and potential role of academies in helping to realize the right to science.

12.3 National Academies

National academies are merit-based organizations that champion the advancement of science, scientific exchange, and evidence-based decision-making.²³ They are typically independent of government and are found in most countries of the world. Building on the foundations of Plato’s academy (387 BC),²⁴ the oldest existing science academies originated in Europe in the 1600s, while academies in the Americas, Asia, and Africa emerged later, beginning in the mid-1800s up until today.²⁵ The newest academies have emerged just in the last few years, especially within Africa, including for example the Rwanda Academy of Sciences (2016),²⁶ the Burundi Academy of Science and Technology (2017),²⁷ and the Eswatini Academy of Sciences (KEAS, 2018)²⁸ among others.

In addition to large differences in the number of years they have been in existence, academies vary significantly in terms of their national role(s) and visibility/recognition, their relationship with their government, their size (i.e., number of members and staff), and their resourcing level and source. National academies of science can broadly serve any number of four primary functions in their countries:

1. (1) Recognition: members are typically elected by current members in recognition for their scholarship and achievements in their field.²⁹ In many countries, academy membership is among the highest honors a scientist can achieve in their career.

2. (2) Science programs and outreach: through various grant and fellowship programs and school/public outreach, many academies deliver science programs for young scholars and the broader community, including science diplomacy programs.

3. (3) Independent science advice: many academies provide high quality, independent advice to their governments on issues of policy importance through mechanisms such as consensus reports, statements, and other products.

4. (4) Research funding: some academies have research funding or laboratory institutions under their jurisdiction (e.g., many of the academies of the former Soviet Union and those in China).

Common challenges include reliance on project-based grant funding for many of their activities, and poor gender balance and diversity (the Global Young Academy and many of the National Young Academies, described below, being exceptions in terms of gender balance and diversity). The first women were elected to national academies beginning in the 1920s. A 2015 survey of sixty-nine academies found that, on average, women made up 12 percent of total membership, although this gender imbalance is beginning to shift.³⁰ Some academies are not completely independent from their governments, due to their national structure.

Serving a coordinating function across academies, the InterAcademy Partnership (IAP) is a global network of 145 academies, including 25 medical academies and three engineering academies. Founded in 1993, the IAP’s vision is for the world’s academies to play a vital role in ensuring that science serves society inclusively and equitably and underpins global sustainable development. Among its activities, the IAP supports the Global Young Academy,³¹ which, in turn, serves as a liaison among the independent National Young Academies (NYAs). In contrast to their “senior” academy counterparts, NYAs are made up of early- to mid-career scholars, often from a wider range of disciplines. Members apply and are competitively selected by their peers, often not only for their excellent scholarship and scientific achievement but for their commitment to serve society. Many NYAs are affiliated with and may receive funding or in-kind support from their country’s senior academy, with various degrees of independence. Today there are more than forty NYAs, the majority having been established in the last ten years.³²

12.3.1 Academies and Human Rights

Historically, national academy engagement with international human rights has tended to focus on advocacy for individual scientific colleagues whose rights have been threatened or violated. In the latter half of the twentieth century, concern about the persecution of colleagues – including certain prominent scientists such as Soviet physicist and dissident Andrei Sakharov – led some national academies to create human rights committees charged with supporting colleagues under threat. The French National Academy of Sciences’ Committee for the Defence of Scientists’ Rights, created in 1978, is among the earliest of these bodies.³³

In 1993, three Nobel Laureates in the sciences, Max Perutz (UK), Torsten Wiesel (USA/Sweden), and Francois Jacob (France), together with Dutch jurist Pieter van Dijk, established an international consortium of academies – the International Human Rights Network of Academies and Scholarly Societies (HR Network) – to enhance cooperation among national academies working on human rights.³⁴ The HR Network, which is not a formal membership body, has a mandate to “put into practice the professional duty of scientists and scholars to assist those colleagues whose human rights have been – or are threatened to be – infringed and to promote and protect the independence of academies and scholarly societies worldwide.”³⁵

The HR Network’s Secretariat, based at the Committee on Human Rights of the US National Academies of Sciences, Engineering, and Medicine, shares information with national academies participating in the HR Network concerning rights abuses involving scientists, engineers, and health professionals. The HR Network also has an Executive Committee (EC) composed of national academy members – including some former academy presidents – that issues public statements concerning threats to the rights of scientific colleagues and the autonomy of academic institutions. Such statements are issued in the name of the Executive Committee, rather than on behalf of the academies of EC members. To date, the outreach of the HR Network Secretariat has focused on senior academies, which respond to rights abuses largely through private actions, for example, sending appeals/private petitions to government officials and making confidential submissions to UN and other human rights complaint bodies.

Since its first formal meeting in 1995, the HR Network has held biennial meetings on science and human rights, which are open to all interested national academies. Violations of colleagues’ rights and freedoms is the major focus of these events, but increasingly – in response to interest from participating academies – they have also explored topical science and human rights themes, such as the relationship between sustainable development, climate change, and rights. More than ninety academies have attended at least one of the HR Network’s biennial meetings or participated in another HR Network activity. Broader engagement of these academies with human rights, however, is highly varied, as revealed by a review of the HR Network’s operations over time and described below.

12.3.1.1 Growing Number of Academy Structures for Human Rights Engagement

When the HR Network was established in 1993, half a dozen national academies had human rights committees. In response to a questionnaire distributed in June 2017 to more than eighty academies, nine academies reported having such a committee and fourteen others reported “sharing” a human rights committee with other national academies in their countries.³⁶ Others, such as the Swiss Academies of Arts and Sciences, reported that they have formally designated a member with overall responsibility for addressing human rights issues. Academies without such structures tend to engage with international human rights and the HR Network on an ad hoc basis.

Most academies with formal, internal human rights structures are based in Europe, with exceptions including the national academies in Korea and Costa Rica. Yet, the academies involved in hosting and attending recent biennial meetings indicate increased interest on the part of academies in the Global South in exploring human rights issues.

While, for the most part, the HR Network continues to focus on responding to violations of the civil and political rights of colleagues and threats to the autonomy of academic institutions, outside the HR Network some academies have explored topics related to economic, social, and cultural rights. As an example, in 2016, the Academy of Science of South Africa (ASSAf) joined with the country’s Department of Science and Technology to host a conference for young scientists that addressed the relationship between rights and genomics and the relevance of human rights for protection of indigenous knowledge systems.³⁷ A 2015 consensus study led by ASSAf, in collaboration with the Uganda National Academy of Sciences, considered both scientific evidence and human rights standards in assessing arguments used to make same-sex relationships illegal.³⁸ The Human Rights Committee of the German National Academy of Sciences Leopoldina³⁹ since 2010 has organized human rights symposia for the European scientific community, in cooperation with other European academies. Notably, a 2015 symposium held by the Leopoldina and the Swiss Academies of Arts and Sciences examined the right to science.⁴⁰

Though the trend for academy engagement with economic, social, and cultural rights is upward, at present, national academies more frequently report undertaking activities on scientific topics that have implications for such rights (e.g., issues related to education, the environment) without explicitly using an international human rights lens.

12.4 Methodology

As the first step in determining academies’ views on how the right to science could be used to address core concerns at the intersection of science and society, the project team developed a fifteen-item questionnaire that was sent to all IAP member academies and National Young Academies in countries that have ratified the ICESCR. The questionnaire, deployed using the SurveyGizmo online platform, was sent by IAP to 128 senior national academies and by the Global Young Academy to 44 NYAs. Responses were received over approximately three weeks in June and July of 2019. Representatives of ninety-two academies total responded to the questionnaire, a response rate of 53 percent. Questionnaire responses were entered into SPSS for analysis.

Questionnaire respondents were asked if they would be willing to participate in a follow up interview. In total, fifty-three of the ninety-two respondents volunteered to be interviewed. Of the fifty-three, twenty senior and young academy respondents were selected. The selection was made to ensure diversity across multiple factors: region, academy size, the degree to which the academy did or did not already engage in human rights activities, and the respondents’ opinion about whether the right to science may or may not be relevant to their work. Of these twenty, fourteen interviews were conducted. The remaining six respondents were either unavailable during the study timeframe or could not be reached. The interviews varied in length from approximately fifteen to sixty minutes, although most took about thirty minutes. The interviews were divided among several project team members and conducted by phone, Skype, or web conference. Interviewers took detailed notes during the conversations. Audio recordings made during the conversations were used to verify notes, as needed. The research team reviewed and verified interviewer notes before three members (M. Vitullo, N. Weisenberg, J. Wyndham) participated in the process of coding the interview notes. Excerpts from the interviewers’ notes (with occasional quotations from the interviewees themselves) are included in the “Results” section.

The interview data analysis process had several stages. First, three members of the research team each closely read a subset of interview notes and used an inductive process⁴¹ to identify concepts that appeared in those interviews. The results were then compiled into a single list of codes. Next, the interview notes were uploaded to the qualitative analysis software package Dedoose. The codes became the basis for an iterative coding process in which one member of the team (M. Vitullo) read and coded all of the interviews, including those from the first stage of the analysis, comparing the compiled list of codes with additional concepts and themes that emerged subsequently. As themes emerged, codes were added or removed. Finally, results from the coding process were then shared with the entire team for further discussion and refinement.

12.5 Results

12.5.1 Characteristics of Responding National Academies

As indicated previously, there is wide variation in the characteristics of national academies, including the number of years in which they have been in existence, the size of their membership as well as the size of their staff. The characteristics of the responding senior and young national academies for this study reflected those same patterns (see Table 12.1):

• the number of academies per region ranged from a low of seven academies in the Middle East and North Africa to thirty-seven academies in Europe;

• the 19 African academies averaged 16 years of existence, while the 37 European academies, on average, were founded more than 150 years ago; and

• among the 37 European academies that participated in the study, more than half have 200 or more distinguished scientists as members. Similarly, 40 percent of the academies in the Americas reported having 200 or more members. In the other regions, less than one-third of responding academies are that large.

• Less variation in staff size is visible across the regions, with the vast majority reporting 100 or fewer staff. Again, European academies are the outliers, where 41 percent report having staffs that are larger. These differences have implications for the academies’ potential role in working toward the fulfillment of the right to science, as will be explored below.

Table 12.1 Characteristics of Responding National Academies

	Africa	Americas	Asia-Pacific	Europe	Middle East & North Africa
Number of Academies
Senior	13	14	10	33	6
Young	6	1	4	4	1
Total	19	15	14	37	7
Average Years Since Founded	16	92	45	151	30
Members*
0–50	42%	27%	29%	11%	0%
51–100	21%	20%	21%	8%	29%
101–200	11%	7%	14%	19%	29%
201+	21%	40%	29%	54%	29%
Staff*
0–50	89%	87%	64%	43%	57%
51–100	0%	7%	21%	8%	29%
101–200	0%	0%	0%	19%	0%
201+	5%	0%	7%	22%	0%

^* Due to missing data, regional percentages do not total 100.

12.5.2 Academies’ Prior Engagement with Human Rights

One indicator of academies’ potential for serving as central actors in the implementation of the right to science may be their prior engagement on human rights issues. The questionnaire asked respondents how frequently their academy engaged in six possible activities related to human rights: (1) organizing panels or inviting speakers; (2) hosting a full program of activities; (3) referencing human rights in publications; (4) referencing human rights when trying to inform government policy; (5) referencing human rights when trying to inform public discussion; and (6) referencing human rights in an official statement.

The results from the prior engagement question were used to calculate an index score indicating the level of human rights engagement within each academy. Scores could range from zero (indicating no engagement with any of the activities) to six (indicating the academy often engaged in all six activities). Across all the academies the average human rights activity score was 2.1 (see Table 12.2). Given that respondents were answering these questions within the limits of their own personal knowledge as well as their own subjective evaluation of the frequency of activities, and acknowledging that within the HR Network there have been discussions regarding the imperfect nature of communication within academies, it is reasonable to assume that some respondents were not fully informed about all aspects of their academy’s human rights engagement. Their responses nonetheless provide a window into academies’ prior engagement with human rights activities, and how levels of activity vary across regions.

Table 12.2 National Academies Engagement with Human Rights and Article 15

	Africa	Americas	Asia-Pacific	Europe	Middle East & North Africa	Mean	Standard Deviation
Human Rights Activity – average score
Possible Range = 0 to 6	1.1	2.4	1.3	3.11	1.0	2.1	1.2
Right to Science-Prior Awareness
Percent that had prior awareness	33%	36%	15%	62%	43%	44%2	50%
Influence on gov policy – average score
None=0; Significant=3	1.4	1.6	1.2	1.5	1.1	1.4	.77
Influence on public discourse – average score
None=0; Significant=3	1.6	1.7	1.4	1.6	1.4	1.6	.77
Potential role in Article 15 fulfillment – average score
None=0; Significant=3	2.83,4	2.1	1.51	1.81	2.03	2.0	.91

1. Across region difference significant at .005 in 1-way ANOVA tests. Due to unequal variances within groups, Welch tests of the equality of means were employed. For the same reason, in post-hoc analysis, Africa was used as the reference category and between group differences were tested using the Dunnett (2-sided) method.

2. Across region differences significant at .005. Tested using Chi Square.

3. Within region difference significant at .005 between “Influence on Government Policy” and “Potential Role in Article 15 fulfillment”. Tested using Wilcoxon Signed-Rank Test for non-parametric samples.

4. Within region difference significant at .005 between “Influence on Public Discourse” and “Potential Role in Article 15 fulfillment”. Tested using Wilcoxon Signed-Rank Test for non-parametric samples

During the follow up interviews, respondents were asked to elaborate on their academy’s engagement with human rights. Those discussions provide insight on at least part of the reason human rights activity was described as minimal: respondents were more likely to equate human rights activity with private actions in response to violations of civil and political rights rather than with public actions taken to advance economic, social and cultural rights. As discussed above, the HR Network exists to encourage and help coordinate academies’ human rights activities. To date, those activities most frequently focus on violations of civil and political rights and take the form of private appeals and submissions to human rights complaint bodies, in contrast to the six categories of public-facing human rights activity measured in the questionnaire. For example, when discussing their efforts on behalf of persecuted scientists, including those targeted, detained, or jailed for their scientific activities, respondents almost always described these efforts in the context of human rights. However, when describing work related to science education, advancing women in science, working toward socioeconomic development, the eradication and control of disease, or scientifically informed policies, respondents were less likely to frame that work explicitly in terms of human rights. An excerpt from a project interviewer’s notes illustrate this point.

He gave the example of a workshop that [the academy] helped to organize in 2017 concerning challenges facing female scientists and the impact of these challenges on career progression. He was on the organizing committee for this event, which provided an opportunity for female scientists (members of the academy and others) to share their experiences, hear the experiences of their colleagues, and discuss how challenges might be addressed. The academy also brought a resource person from the United States for this activity. He said that, in thinking further about our questionnaire, he sees this as an activity with a connection to human rights.

12.6 The Right to Science is Little Known Yet Perceived by Many As Core to the Academies’ Missions

Academies possessed limited prior knowledge of the right to science. Fewer than half of the ninety-two questionnaire respondents had heard of the right prior to receiving the questionnaire. There were, however, significant differences across regions. Academies in the Asia-Pacific region were the least likely to be aware of the right, where 33 percent reported prior knowledge. Academies in Europe were the most likely to report prior awareness, with 62 percent reporting having heard of the right before receiving the questionnaire.

After learning about the right to science, respondents described the ways the concept captured their attention. One respondent immediately sent the information to his academy’s Executive Council. Other respondents asked for more information about the right, how it was defined, and what other countries were doing on the topic. One respondent told the project interviewer that she thought that there was a tacit understanding of the right to science within her academy, but that it had never been directly expressed as such.

She mentioned that, when she viewed our questionnaire, this was the first time she had thought about a human right to science. She indicated that she has thought about scientific advancement almost as a privilege but would like to learn about the notion of science as a right. She mentioned that there is something powerful about this idea.

Although in most cases the academies had not engaged in activities explicitly tied to the right to science, many respondents viewed the concept as central to their missions and seemed to believe that future activity on this topic would be fully in alignment with their priorities.

I think in many respects the academies are ideally placed to [work on the fulfillment of the right to science]. For two reasons. The one is that, most academies see themselves as offering policy advice to a range of role players who may in the first instance be legislators of some kind. But [they] may also be the general public, or business, or whatever. I think academies, by the reports that they produce, have the opportunity to influence people in these matters, and influence them to think of having a right to science. Second aspect of it, is that individual members of academies have expertise, and can use that expertise to highlight these issues and make them more available to the broader public.

On a scale of 0 to 3 (with 0 representing no influence, and 3 representing significant influence), academies across the globe reported an average government influence level of 1.4, and an average public discourse influence of 1.6. Regional variations in these two influence scores were not significant in one-way ANOVA tests of difference in means. The questionnaire respondents in Africa and in the Middle East evaluated their academies’ potential role in the fulfillment of the right to science more positively than their ability to influence government policy generally. Academies in Africa also saw their potential role in the fulfillment of the right to science as greater than their potential to influence public discourse. Compared to the academies in Africa, academies in Asia-Pacific and Europe saw significantly less of a role for themselves in the fulfillment of the right to science.

12.7 Barriers

While the right to science resonated with the interview respondents once they were aware of it, and in many cases, it was concordant with the activities of their academy, that does not suggest a simple or easy path from nascent interest to meaningful engagement. Other parts of the interviews brought to light a variety of challenges that would have to be addressed in any such efforts.

12.7.1 Lack of Knowledge

While both the questionnaire responses and the interviews provided evidence that there was interest in the right to science, as noted above there was little basic understanding of its history, meaning, or implications. Interviewer notes reveal a variety of basic questions: What precisely is the right to science? Is it the right to human knowledge that has already been discovered? How could an academy go about taking action on the right to science? Who are the key stakeholders?

He mentioned that it would be useful for the academy to have a better understanding of the right to science, particularly as many people are not conversant on this topic. It would, for instance, be useful … to know what is being done in other countries on this issue.

One respondent thought that some of her academy’s members might not have a strong interest in the right to science initially because of their lack of familiarity with the topic. But she thought others would be interested in learning more about the right and exploring its implications. She said that additional information, perhaps in the form of seminars and workshops, was needed to help members better understand the right.

12.7.2 Organizational Structure

Academies’ ability to work toward the fulfillment of the right to science will be influenced by their organizational structures. The question of whether the right most appropriately fell within the purview of the physical sciences, the social sciences, or even philosophy and the humanities arose in several interviews. In one academy, the respondent was concerned that working on the right to science would seem to be too focused on the physical sciences and not sufficiently applicable to the other parts of the academy’s mission. In another case, where the respondent’s academy was focused exclusively on the physical sciences, the respondent was concerned that other academies in that country would see the right as more appropriately within their purview.

A few academies reported having standing committees on human rights with high-level members. In those academies, human rights activities were prioritized and acted upon. The fact that few academies have such a committee or office represents another potential organizational barrier to academies’ engagement on the right to science. Still, the above-mentioned example of the South African Academy of Science demonstrates that human rights committees are not a requirement for meaningful academy human rights engagement.⁴²

Available resources can also be a barrier to engagement on the right to science. While the academies in Africa saw themselves as having the most potential for working toward the fulfillment of the right, nearly 90 percent of them had fifty or fewer staff and on average they had existed for the shortest time. And in a variety of cases from across the globe, relatively newly formed academies were in a very tenuous state of existence, with limited capacity to take on activities beyond their own actualization as a viable organization.

This is a very “young” academy; it was created [about 20 years ago], and government only recognized the academy by presidential decree [a few years ago]. The first 10 years of the academy are primarily devoted to anchoring the foundations of the academy, to be recognized and establish the pillars.

Any effort to engage national academies in the right to science will need to consider the wide disparities in organizational structures and resources available across nations and between senior and young academies.

12.7.3 Government Relations

Ninety-five percent of respondents to the questionnaire said that informing policy at the national level was within the scope of their mission. Yet, in the interviews, lines of communication with government actors were often described as missing and, in some cases, openly hostile. Lack of government funding was an issue that was raised by several respondents, whose academies struggled to establish a program of activities without financial resources. The respondents also discussed political constraints on the academies related to both civil and political rights and economic, social, and cultural rights. When speaking out on behalf of persecuted scientists, some respondents mentioned experiencing pressure from the government not to endanger relationships with other offending countries by speaking out on human rights. One respondent mentioned receiving pressure from the government because the academy’s recommendations regarding a major international development project were in contradiction to the government’s plans.

12.8 Approaches to Overcoming Barriers

While the data discussed here points to a variety of potential barriers to academies’ engagement in the fulfillment of the right to science, it also provided insights on possible approaches to overcoming those barriers.

12.8.1 Working with Partners in Collaborative Efforts

When academies engaged in human rights-related activities, they often did so in partnership with other organizations and the value of collaboration was mentioned by respondents from a wide range of academies. Respondents spoke of collaborations with entities within their own countries, including their counterparts in government departments of science and technology as well as other government ministries, national museums, foreign offices, and embassies. They spoke of partnerships with other academies within their own countries. Creating partnerships with senior academies was seen as essential for young academies with fewer resources and less supporting infrastructure. One member of a young academy described its relationship with the country’s senior academy as “symbiotic.” Partnerships with other organizations were also commonly mentioned, including the ALLEA (European Federation of Academies for the Sciences and Humanities), the GYA, the HR Network, the IAP, Scholars at Risk, The World Academy of Sciences (TWAS), and the UN/UNESCO.

12.8.2 Identifying Strong Shared Interests across Regions

The questionnaire asked whether, over the past three years, the academy had engaged in activities related to any of eight specific topics: science education, health care, climate change, sustainable development, emerging technologies, ethics, scientific freedom, and open access. We were interested to see if there was regional variation in levels of interest in these topics. Within each region, the activity engaged in by the highest proportion of academies in that region was ranked first. The activity engaged in by the next highest proportion of academies was ranked second, and the one following third. If two activities enjoyed engagement in the same proportion of academies in a region, multiple activities could have the same rank. We then examined areas of overlap across regions.

The results of this analysis are presented in Table 12.3. Science education and sustainable development appeared among the first or second ranked topical activities for academies in every region examined. Conversely, open access was ranked just third in Europe, and scientific freedom did not rank in the top three for any region. This suggests that introducing the right to science as a tool for working on the areas of science education and sustainable development might be widely perceived as important and useful. On the other hand, focusing on the right to science as applied to open access and scientific freedom are topics that would be less likely to receive broad support.

Table 12.3 Ranking and Overlap in Academy Activities by Region

Note: If within a region, the proportion of academies engaging in a specific activity were equal, this could result in two activities being “tied” within a rank.

12.9 Conclusion

The central question at the core of this study was whether, and to what extent, there existed the potential for national academies to adopt a central role in the implementation of the right to science. The right has been recognized as lying at the “heart of the mission” of the world’s largest scientific membership organization⁴³ and it is a right that all countries that are a party to the International Covenant on Economic, Social, and Cultural Rights are bound to respect, to protect, and to fulfill. The UN General Comment on the right to science reveals conceptual agreement around the general scope of the right. Building on the growing literature on the right, and the nascent UN efforts, the imperative now is to give the right life by applying it in practice.

The results of this study reveal that, to the extent that academies engage in activities adopting an explicit human rights frame, they are most often focused on civil and political rights, and particularly the rights of scientists. Yet, there is considerable work being undertaken by academies that addresses policy concerns directly related to the full scope of human rights, and a recognition that the right to science in particular is relevant, if not even core, to the work of the academies.

Although academies identified several actual and perceived barriers to greater engagement in human rights, they also provided examples of ways such barriers can be overcome, suggesting a roadmap for future engagement by academies with the right to science. The first and most vital step will be the provision of resources, including training and opportunities for dialogue about the right to science among academies, their staff, and their members to lay the groundwork for future engagement.

The findings also make clear that building upon existing partnerships and collaborative efforts on human rights would be the appropriate approach for any effort to engage academies in activities related to the fulfillment of the right to science. Moreover, such an approach has the benefit of leveraging the greater resources of some academies in ways that empower action on the part of those that are less robust organizationally. In addition to the HR Network, another specific mechanism that was mentioned in the interviews was for IAP to consider issuing a statement on the right to science; such a statement could be issued jointly with the GYA and the National Young Academies.

The right to science is articulated in an international treaty that binds states, and those states are required periodically to report to the UN about their efforts toward the fulfillment of their obligations. In that context, if national academies initiate new activities and frame existing activities in terms of the right to science, this could provide a unique benefit to states party, helping foster the progressive realization of the right in ways that could be documented to the United Nations but also building more positive relationships between academies and governments.

As such, the right to science could be a valuable tool to assist national academies in strengthening their current activities and furthering their overall goals. As multiple academies recognized the right to science as relevant to, if not central to, their activities, the opportunity exists for academies to explore how the framework of the right could be used to inform the cultivation of relationships with relevant interlocutors at the national level. Academies could also build bridges regionally and internationally with academies in countries bound by the right and potentially facilitate prioritization of organizational policy goals. Furthermore, as one respondent from a young academy said, connecting the activities of the academy to human rights might provide a way to respond to the interest of members to connect with something larger than themselves. Indeed, implementation of the right to science would be of great benefit not only to scientific enterprise, but also to all of society.

13 The Right to Science in Practice A Proposed Test in Four Stages

Sebastian Porsdam Mann , Yvonne Donders , and Helle Porsdam

13.1 Introduction

The human right to enjoy the benefits of the progress of science and its applications (the right to science, or RtS), enshrined in Article 27(2) of the Universal Declaration of Human Rights (UDHR) and Article 15(1)b of the International Covenant on Economic, Social, and Cultural Rights (ICESCR) “adds a legal and moral dimension to a range of fundamental issues, including scientific freedom, funding, and policy, as well as access to data, materials, and knowledge” (Porsdam Mann et al., 2018). Part of the promise is that the RtS, as it becomes more developed, may be used as a legally binding and normatively weighty framework for the assessment of the ethical and human-rights related aspects of science and scientific policy.

This chapter introduces the four-step test, a framework developed as a means to assess whether a policy complies with the obligations imposed by the right to science under international human rights law. In doing so we, like the Committee on Economic, Social and Cultural Rights in its new General Comment (CESCR, 2020), adopt an “internal perspective” for the purposes of this sketch. This means that we have drawn extensively on scholarship, guidance, and interpretation of the ICESCR itself.

Unfortunately, there has not been space here to fully explore the “external perspective,” in which the relations between rights across treaties and other human rights instruments are factored into the desiderata that make up our proposed test in four stages. We will explore this in subsequent work. We hope, however, that the sketch presented here will engender fruitful discussion so that it may be made into a useful judicial and policy framework.

13.2 Background

We take as our points of departure several general approaches to the interpretation of State obligations under international human rights law (Donders, 2011), including the provisions laid out in the Vienna Convention on the Law of Treaties (Vienna Convention).¹ Article 31(1) of the Vienna Convention stipulates that, “[a] treaty shall be interpreted in good faith in accordance with the ordinary meaning to be given to the terms of the treaty in their context and in the light of its object and purpose.” This context is defined in Article 31(2) as including general rules of international law as well as further applicable agreements and treaties. More importantly, since there are few² agreements and treaties between countries with regards to the RtS, Article 31(3)b states that also to be taken into account is “[a]ny subsequent practice in the application of the treaty which establishes the agreement of the parties regarding its interpretation.” This includes statements of official treaty bodies, in particular General Comments, which are authoritative interpretations. In our case, the General Comments by the Committee on Economic, Social and Cultural Rights (the Committee) are especially relevant.

As a human right, the RtS places obligations on States which have signed and ratified the ICESCR. According to the tripartite typology (Eide, 1987), an analytical device much used by the UN and human right scholars to interpret the nature of State obligations under human rights law, these obligations can be conceptually stratified into three: the obligation to respect the right, to protect it and, finally, to fulfil it. Paragraph 41 of General Comment No. 25 adopts this language: “States Parties have an obligation to respect, protect and fulfil the [RtS].”

The first refers to the obligation of States not themselves to violate a right or unjustifiably interfere in its enjoyment. The obligation to protect is somewhat more burdensome, requiring that the State must prevent third parties from violating a right. Finally, to fulfil a right, a State must ensure (facilitate and provide) that the various resources, infrastructure, and necessary funding are available to fully realize its enjoyment, also for noncitizens.

As of this writing, 174 countries have signed the ICESCR. Of these, 170 are full States Parties; however, Palau, Comoros, Cuba, and the United States of America have signed but not ratified the Convention. As Cesare Romano points out in his contribution to this volume, the USA is, however, bound by the UDHR³ and the American Declaration of the Rights and Duties of Man, the latter of which contains the first instance of the right to science in international law (see Chapter 2).

Moreover, a country which has signed but not ratified the ICESCR is still bound by Article 19 of the Vienna Convention not to act in a way that would defeat the object and purpose of that treaty. In other words, the USA is still bound to respect the RtS. This in contrast to the 170 countries that have signed and ratified the ICESCR, which are in theory bound by all three levels of obligations.

These obligations must, however, compete for scarce resources with other human rights and policy goals. For this reason, the obligations that States are under vis-à-vis the ICESCR are subject to the requirement of progressive realization, laid out in Article 2(1): States must “undertake to take steps, individually and through international assistance and cooperation, especially economic and technical, to the maximum of its available resources, with a view to achieving progressively the full realization of the rights recognized in the present Covenant by all appropriate means, including particularly the adoption of legislative measures.”

In its General Comment on Article 2, the Committee has made clear that States are under an obligation to take these progressive steps within a “reasonable, short period of time” and that this obligation “implies not only legislative measures, but also administrative, financial, educational, social and other measures, including judicial remedies” (Donders, 2011). The Committee also states that these obligations are proportional to the resources available to a State, such that the more resources are available, the greater the obligations under the ICESCR.

Paragraph 24 of the General Comment closely follows this phrasing:

States Parties must take steps, to the maximum of their available resources, for the full realization of the [RtS]. While full realization of the right may be achieved progressively, steps towards it must be taken immediately or within a reasonably short period of time. Such steps should be deliberate, concrete and targeted, using all appropriate means, including the adoption of legislative and budgetary measures.

Some obligations, however, are so important that they form an exception to this rule and must be observed immediately, regardless of resources. This includes the obligation under Article 2(2) ICESCR for the rights in that document to be enjoyed without discrimination. Thus, paragraph 25 of the General Comment reminds us that “States Parties are under an immediate obligation to eliminate all forms of discrimination against individuals and groups in their enjoyment of ESCRs.”

Finally, both Articles 2(1) and 15(4) ICESCR mention the importance of international cooperation and assistance. In the General Comment on Article 2, the Committee makes clear that, for the purposes of obligations under the ICESCR, “available resources” should be interpreted to include those resources available from international cooperation, and that wealthier countries are under a special obligation to assist the less prosperous (CESCR, 1991). The General Comment on Science, in devoting its sixth section wholly to international cooperation and assistance, stresses the importance of these obligations.

13.3 Normative Content

The normative content of the RtS has been treated in detail by the General Comment, which draws heavily on the 2017 UNESCO Recommendation on Science and Scientific Research. Section II of the General Comment is titled “Normative Content” and contains several provisions, laid out in paragraphs four to fifteen, which define key terms.

13.3.1 Science

Paragraph four of the General Comment quotes the 2017 UNESCO Recommendation’s definition of science. Science is:

the enterprise whereby humankind, acting individually or in small or large groups, makes an organized attempt, by means of the objective study of observed phenomena and its validation through sharing of findings and data and through peer review, to discover and master the chain of causalities, relations or interactions; brings together in a coordinated form subsystems of knowledge by means of systematic reflection and conceptualization; and thereby furnishes itself with the opportunity of using, to its own advantage, understanding of the processes and phenomena occurring in nature and society.

As clarified by paragraph six,

science, which encompasses natural and social sciences, [thus] refers both to a process following a certain methodology (“doing science”) and to the results of this process (knowledge, applications). Though other forms of knowledge may claim protection and promotion as a cultural right, knowledge should only be considered as science if it is based on critical inquiry and open to falsifiability and testability.

13.3.2 Scientific Advancement and Scientific Progress

Paragraph seven defines the terms “scientific advancement” (used in the UDHR) and “scientific progress” (used in the ICESCR): “these expressions emphasize the capacity of science to contribute to the well-being of persons and humankind. Thus, development of science in the service of peace and human rights should be prioritized by States over other uses.”

13.3.3 The Applications of Scientific Progress

The RtS explicitly recognizes the rights of everyone to enjoy the benefits of science and its applications. The meaning of this latter phrase is defined in paragraph eight of the new General Comment:

Applications refer to the particular implementation of science to the specific concerns and needs of the population. Applied science also include the technology deriving from scientific knowledge, such as the medical applications, the industrial or agricultural applications, or the information and communication technologies.

13.3.4 The Benefits

The General Comment, in paragraph nine, also makes clear that the benefits of scientific progress and its applications extend beyond material gains such as “vaccination, fertilizers, technological instruments and the like.” Benefits also refer to

the scientific knowledge and information directly deriving from scientific activity, as science provides benefits through the development and dissemination of the knowledge itself. Finally, benefits refer also to science’s role in forming critical and responsible citizens who are able to participate fully in a democratic society.

These definitions will be important resources as we sketch the four-step test framework below.

13.4 Four-Step Test

13.4.1 Step One: Does a Given Policy, Product, or Aspect of Science Constitute a “Benefit of Scientific Progress” or “Its Applications”?

The first step involves determining whether the RtS is applicable to a given situation or issue.

The legal subjectivity of the RtS – the question of who enjoys or is entitled to the right – is every individual human; in other words, all humans are a legal subject of this right. This is a feature of the human rights framework in which the RtS is nested. Secondly, the right applies equally to every human, so it is not the case that some have more or less of a RtS due to, for example, their education or income. These values of inclusion, equality, and universality are fundamental human rights principles, and are included in the Preamble and Article 2 ICESCR.

The scope of the RtS centers on the benefits of scientific progress or its applications. The definitions of these are laid out according to the General Comment in the section above.

Here it should be noted that the RtS grants all individuals the right to share in the benefits of the products of scientific progress, which implies a participatory aspect of the right. As paragraph 54 of the General Comment on Science states, “the principles of transparency and participation are essential to [making] science objective and reliable, and not subject to interests that are not scientific or are against human rights and the welfare of society.”

Although this kind of inclusion is a fundamental human rights principle, the corresponding principle of participation takes on additional nuances in the present context. At one extreme, active participation by the citizenship in a dialogue with science and scientists can “promote public trust and support for sciences,” as recognized in paragraphs 54 and 55, and “in particular through a vigorous and informed democratic debate on the production and use of scientific knowledge.”

The General Comment acknowledges, however, that the level of participation in science will vary according to the interests and capacities of individuals. Thus, according to paragraph 65 “States parties should … ensure [the active participation of peasants and other people working in rural areas] in the determination of priorities and the undertaking of research and development, taking into account their experience and respecting their cultures” (emphasis added).

Whereas there are some areas of science in which truly everyone can participate (such as data donation), much of science requires too much specialized knowledge and equipment for even trained scientists to participate in science outside their immediate expertise. There will necessarily be degrees between these extremes.

Thus, the first step in our framework is to ask whether the issue in question meets the definitions laid out in the General Comment and is therefore within the scope of the RtS.

13.4.2 Step Two: Does the Policy Facilitate or Limit the Enjoyment of the RtS?

Once it has been determined that an issue is within the scope of the RtS, the next step is categorizing the issue or policy according to whether it fulfills the RtS or meets criteria for legitimate limitations, retrogressive measures, or derogations. It is important to distinguish between these, because although all three involve a lower, or lowering of, the level of enjoyment of the RtS, they have widely different criteria for legitimacy (Donders, 2015).

A derogation is a full or partial elimination of an obligation under international human rights law invoked in exceptional circumstances, such as epidemics, civil unrest, or war. Derogations may be invoked where there is an exceptional threat to the functioning of the State, where a lesser restriction in the form of a limitation does not suffice, where the primary objective of the State in derogating from a right is the fast and full return to a situation in which the enjoyment of human rights can be restored, and where they are used as a last resort (Müller 2009). In addition, not all rights are derogable, although the list of non-derogable rights varies from treaty to treaty.

The ICESCR, unlike the ICCPR, does not contain a derogation clause specifying the circumstances under which a derogation may be legitimately made. Müller (2009) points out that there is not much interpretation by the Committee on Economic, Social and Cultural Rights on the topic of derogations to economic, social and cultural rights, and that their position as to the legal basis of any such derogations is unclear. Indeed, the new General Comment does not contain the word “derogation.”

The Committee, has, however, in its Statement on Poverty and the ICESCR, stated that certain core minimal obligations are non-derogable: “if a national or international anti-poverty strategy does not reflect this minimum threshold [core obligations], it is inconsistent with the legally binding obligations of a state party” (CESCR, 2001, para. 17). This might be interpreted as implying that some obligations beyond the minimal core are indeed derogable.

A retrogressive measure, on the other hand, is an act which reduces the enjoyment of a human right relative to its previous level of enjoyment, and which thus interferes with the duty of progressive realization of human rights under Article 2(1) ICESCR. “As with all other rights in the Covenant,” provides paragraph 24 of the General Comment, “there is a strong presumption that retrogressive measures taken in relation to the RPEBPSA are not permissible.” It goes on to list several examples of retrogressive measures:

the removal of programs or policies necessary for the conservation, the development and the diffusion of science; the imposition of barriers to education and information on science; the imposition of barriers to citizen participation in scientific activities, including misinformation, intended to erode citizen understanding and respect for science and scientific research; the adoption of legal and policy changes that reduce the extent of international collaboration on science, etc.

Retrogressive measures may, however, be necessary in exceptional circumstances such as those mentioned above for derogations (where their extent is not such as to require a derogation), but may also be justified by less extreme exigencies, such as severe recessions or natural disasters. The Committee has, in its Statement on the drafting of the Optional Protocol to the ICESCR, given guidelines as to how it will evaluate retrogressive measures in a case-by-case and country-by-country approach according to the following criteria:

1. (i) The country’s level of development;

2. (ii) The severity of the alleged breach, in particular whether the situation concerned the enjoyment of the minimum core content of the Covenant;

3. (iii) The country’s current economic situation, in particular whether the country was undergoing a period of economic recession;

4. (iv) The existence of other serious claims on the State party’s limited resources; for example, resulting from a recent natural disaster or from recent internal or international armed conflict;

5. (v) Whether the State party had sought to identify low-cost options; and

6. (vi) Whether the State party had sought cooperation and assistance or rejected offers of resources from the international community for the purposes of implementing the provisions of the Covenant without sufficient reason.

To this, the Committee adds, in paragraph 24:

In the exceptional circumstances under which retrogressive measures may be inevitable, States must ensure that such measures are necessary and proportionate. They should remain in place only insofar as they are necessary; they should mitigate inequalities that can grow in times of crisis and ensure that the rights of disadvantaged and marginalized individuals and groups are not disproportionately affected; and in addition guarantee the minimum core obligations.

The fact that retrogressive measures are justified by criteria such as these distinguishes them from limitations. Limitations reflect the fact that the enjoyment of most human rights is not absolute. The human rights of individuals compete with other legitimate goals such as the general welfare and State interests, and individual rights compete with each other for their realization; to reflect the fact that compromises between other projects and other human rights must be made to avoid stalemate, limitations may be imposed.

Of special relevance in the context of the RtS, paragraph 22 of General Comment No. 25 recognizes with regard to limitations that, “[some] limits on the [right] might be necessary, as science and its applications can, in certain contexts, affect [other economic, social and cultural rights].” As we shall see below, there are three elements highlighted in the Committee’s understanding: respect for core obligations, proportionality, and the expectation that benefits outweigh burdens.

Policies or issues meeting the criteria for a derogation or retrogressive measure are unlikely to respect the RtS. Such policies will, except in exceptional circumstances, fail to be justified and should not be adopted. However, policies that do not meet the criteria for derogations or retrogressive measures may still infringe on the enjoyment of the RtS to a lesser extent, or two or more policy options may differ in the extent to which they are likely to facilitate enjoyment of the RtS. Whether such limitations are legitimate, and how to choose between competing policy options, is assessed in the next two steps.

13.4.3 Step Three: Does the Policy Form a Legitimate/Acceptable Limitation on the Enjoyment of the RtS?

A policy, regulation or law, which is not compatible with the RtS, is one that goes directly against the object and purpose of the RtS (especially its core normative content) or its associated foundational human rights structure. Paragraph 52 of the new General Comment recognizes this in the context of scientific freedom: “core obligations related to the right to participate in and to enjoy the benefits of scientific progress and its applications require States parties to … remove limitations to the freedom of scientific research that are incompatible with article 4 of the Covenant.”

The third step involves evaluation of the options not ruled out by step two as unjustified derogations or retrogressive measures according to the criteria for legitimate limitations contained in Article 4 ICESCR.

In paragraph 21, the Committee refers to three relevant and important elements of ICESCR Article 4. These are that limitations must be determined by law, they must be compatible with the nature of these rights, and must be enacted solely for the purpose of promoting the general welfare in a democratic society. We comment below on the first and second of these and discuss the third in step four.

To be legitimate, limitations on the RtS must be determined by law. This means that such limitations must, as a minimum, observe the rule of law and be issued through the proper channels. According to the Limburg principles, this means that no limitations may occur unless “provided for by national law of general application which is consistent with the Covenant and is in force at the time the limitation is applied” (paragraph 48); that such laws shall not be “arbitrary or unreasonable or discriminatory” (paragraph 49); that they shall be “clear and accessible to everyone” (paragraph 50); and that adequate “safeguards and effective remedies shall be provided by law against illegal or abusive imposition on application of limitations on economic, social and cultural rights” (paragraph 51). These last safeguards may include vetting by the national judiciary in some national contexts.

For limitations which are proposed but not yet active, the equivalent of this criterion is that such limitations be determinable by law, for example, be of a form that can reasonably be expected to pass through the regular channels of the rule of law.

The requirement that a limitation be compatible with the nature of the rights contained in the ICESCR is an important but somewhat complex aspect of Article 4.

Firstly, this requires limitations to be compatible with the general and fundamental human rights principles that underlie all of human rights law. Originally set out in the UDHR, these include dignity, the rule of law, equality and nondiscrimination, and universality. Nondiscrimination in particular is mentioned prominently in the ICESCR and UDHR and is considered a core obligation of RtS with respect to science-related policy, both according to existing scholarship and to the new General Comment (paragraphs 26–28; (Donders, 2011)).

Most importantly, this means that everyone enjoys the RtS in equal measure, and thus that ceteris paribus no one’s interests can be weightier than their fellow human’s. Anything which is contrary to these fundamental principles cannot be compatible with the nature of the rights which are derived from them. Most of these are relatively easy to assess and understand.

Dignity, however, is not so easily defined. It is perhaps the most important, and certainly the most fundamental, human rights principle. At the same time, it is the least well characterized. Philosophers and legal scholars have defined dignity as reflecting, and respecting, the capacity of humans to act as moral agents and to choose for themselves worthwhile projects, goals and expressions of their character in their own life (Beyleveld and Brownsword, 2001). In the human rights system, however, the definition of dignity is not based on capacities, but rather on species membership: all humans possess human dignity.

Secondly, as briefly touched upon above, the provision, “compatible with the nature of [ICESCR] rights,” has been defined by the Committee in its General Comment No. 25 with regard to the RtS:

As understood by the Committee, this implies that limitations must respect the minimum core obligations of the right, and must be proportionate to the aim pursued, which means that where there are several means reasonably capable of achieving the legitimate aim of the limitation, the one least restrictive to ESCRs must be selected and the burdens imposed on the enjoyment of the RPEBSPA should not outweigh the benefits of the limitation.

This definition is complex in that it is a composite of several more or less easily defined elements. After stressing the respect for minimum core obligations, the Committee goes on to unpack the issue of proportionality into two specifications. The first concerns the selection of the limitation that is the one least restrictive to ESCRs; the second the burdens imposed that should not outweigh the benefits of such a limitation.

In paragraph 51 of General Comment No. 25, the Committee makes clear that “States parties have to implement, as a matter of priority, core obligations.” Proposed limitations involving the dereliction of a core obligation are by definition not compatible with the nature of the ESCR rights.

It is extremely significant that the Committee has explicitly declared these to be minimum core obligations. Minimum core obligations are treated differently than other human rights obligations. As explained by Donders (2015):

The CESCR … has determined that, notwithstanding the concept of progressive realization laid down in Article 2 ICESCR, “ … a minimum core obligation to ensure the satisfaction of, at the very least, minimum essential levels of each of the rights is incumbent upon every State party” … “ … in order for a State party to be able to attribute its failure to meet at least its minimum core obligations to a lack of available resources it must demonstrate that every effort has been made to use all resources that are at its disposition in an effort to satisfy, as a matter of priority, those minimum obligations”. In other words, in principle, retrogressive measures may not affect the minimum core of the rights, since the core should be implemented irrespectively of the availability of resources.

(emphasis added).

The requirement that any limitations be appropriate and proportionate can be derived from statements by the Human Rights Council and General Comments by the Human Rights Committee on the International Covenant on Civil and Political Rights, and, given their general nature and high importance, it is plausible to argue that they are also applicable in the context of ICESCR rights (Müller, 2009). As we saw, the understanding of ‘proportionate’ offered by the new General Comment in paragraph 22 encompasses two things: choosing the option least restrictive to other economic, social and cultural rights and only imposing burdens that do not outweigh the benefits of such a limitation.

Similarly, General Comment No. 27 on the ICCPR, paragraph 14, states that any limitations must be appropriate to achieving the suggested aim, and must be the least restrictive of the possible options. In the context of the ICESCR, the only legitimate aim of limitations is the general welfare. The requirement of proportionality here serves as a constraint on the choice of a limitation. Out of the set of possible limitations, only that limitation may be chosen which is appropriate for the aim and the least restrictive (on its impact on other human rights).

In practice this will mean that the stronger and more pressing a social need is – in terms of, for example, furthering the general welfare – the more likely it is that a given human right may be limited. Conversely, those rights that are arguably less important for the general welfare require less of a pressing social need to be legitimately limited.

13.4.4 Step Four: Which is the Best Remaining Option for Promoting the General Welfare in a Democratic Society?

Finally, once a list of options consistent with the requirements in the preceding three steps has been drawn up, the fourth step provides a few additional tools to narrow down the set of acceptable choices.

According to the final limitation criteria of ICESCR Article 4, “the State may subject such rights [to limitations] … solely for the purpose of promoting the general welfare in a democratic society.” Importantly, it is not just the welfare in a society that is mentioned, but the general welfare. This reflects the human rights principle of inclusiveness and the premise, common to many consequentialist normative theories, that the preferences, interests and welfare of an individual is of the highest importance, but no more so for any one individual than for another.

It is worth stressing this point because it has so many important consequences. First, it makes it much harder to justify a limitation on the RtS which would benefit only a select group of individuals, rather than everyone in the society. Second, and related, this provision forces policymakers and policy evaluators to include all of a society’s individual interests in their deliberations before issuing policy. This shift in perspective is likely to be a great boon in itself. It is also likely to increase public confidence in policy.

The “general welfare” is not defined in any greater detail. However, the requirement that any limitations be “solely” for the purpose of the general welfare may be interpreted to imply that limitations cannot be imposed for reasons of public order, public morality, national security, and so on. This essentially leaves only the social and economic wellbeing and happiness of each individual as a legitimate basis for limitations (Müller, 2009). It could however also be argued that public order, public morality, and national security serve the general welfare and are thereby included in this concept. Exceptions may also arise due to the close link between the RtS and other human rights that may be limited for some of the aforementioned reasons, such as freedom of expression and freedom of association (Donders, 2015). Moreover, restrictions due to fundamental human rights principles such as dignity and the interdependence of human rights still apply; legitimate limitations must meet all of these standards.

One concrete example where the human rights principle of inclusiveness comes into play is intellectual property (IP). Rights of authors and inventors are important to help assure the public “of the credibility of their claims of innovation,” as well as offering “assurance to the public of the authenticity of the works presented to it,” wrote Richard Pierre Claude, one of the earliest and most astute commentators on the RtS (Claude, 2002, p. 52). Should these rights clash with people’s right to science and culture, however, “the burden of demonstrating priority lies with property rights claimants” (Claude, 2002, p. 53). From a human rights-based perspective, there exists a presumption against property rights because “the use of scientific achievements should promote the fullest realization of human rights without discrimination, including that which follows from the advantages enjoyed by those asserting property rights” (Claude 2002, p. 53).

This radically different baseline assumption, which puts the effects of scientific advances on individuals, rather than the inventor, at the center of analysis, is one of the most important features of the RtS framework. Under it, the default is that everyone should be able to benefit from scientific advances, and only if certain, well-described conditions are met, may this presumption in favor of individual access rights be limited. Similarly, the starting point for any conversation concerning the intersection between science and society based on the RtS must be its effects on all citizens equally, and not only those able to pay or otherwise to advance their interests.

That this is necessary is seen by simple statistics such as the 10/90 gap, whose name derives from the fact that less than 10 percent of the worlds medical expenditures are spent on the diseases and conditions which make up 90 percent of the disease burden. Typically this is because the majority of the disease burden is in countries less able to pay for medications; roughly a third of all deaths occur from diseases where a cure or prevention is already known, but is not undertaken or provided for reasons related to resources (Hesketh, 2005): Thus, “[the] issue, however, is not the unavailability of medicines in the world market. The problem in their view is that the poor are unable to access these medicines largely because of poverty, inadequate health infrastructure, and overbearing governments. These barriers need to be removed to make the drugs available to poor people” (Vidyasagar, 2006).

In contrast, access to medicines as a benefit of scientific progress would be the default option under the RtS. The point is that everybody has such a right unless clear, pre-defined criteria are met.

The inclusion of the qualifier, “in a democratic society”, was, during the drafting process, considered to be of “vital importance … since in its absence … [the limitation clause] might very well serve the ends of dictatorship” (quoted in Müller, 2009). One way this might happen would be for an authoritarian or other nonrepresentative government to define the general welfare in a way that does not correspond to the aggregate welfare of each individual in society, for example by declaring the welfare of some class of political opponents to be irrelevant, or by focusing on elements of welfare that only benefit some rather than, or at the expense of, others, such as reductions in the maximal income tax brackets, or subsidies for farms or churches. Thus what really matters here is not necessarily that the government form be a pure democracy, but rather that it be a kind of governance structure that truly and equally values the interests of each member of society, rather than the ruling or some other class.

Of relevance here is also Section III: Elements of the right and its limitations of the General Comment, in its Section A, which lays out the elements of the right using the commonly utilized four-A (here AAQA) scheme. Paragraph 19, which defines acceptable science, includes a maximizing principle:

Acceptability implies also that scientific research has to incorporate ethical standards … Some of these standards are: benefits to research participants and other affected individuals should be maximized and any possible harm minimized with reasonable protections and safeguards.

[emphasis added]

It can be argued that a maximizing principle is implied generally. Just as proportionality means that the least restrictive option should be chosen, so the importance of the general welfare – the only aim for which limitations may be set – implies that the option most likely to provide the most overall general welfare should be chosen. We submit on our own authority that, ceteris paribus, the operative word must be preferred over the weaker should.

Thus, step four asks which of the policy options that have cleared steps one through three, as well as being appropriate, proportionate, and necessary in a democratic society, are likely to add to the general welfare of society, and requires that we choose the one out of these most likely to lead to the greatest increase in general welfare.

13.5 Concluding Remarks

One section of the new General Comment is dedicated to the interdependence of the RtS with other rights. Thus, paragraph 63 acknowledges that, “the REBSP is a human right with an intrinsic value, but it also has an instrumental value, as it constitutes an essential tool for the realization of other ESCRs, in particular for the right to food and the right to health.”

In a systematic review conducted of the literature on the RtS, the most commonly stressed themes found were access and the connection to other human rights, with other highly cited themes including intellectual property protection, participation in science, and dual use (Porsdam Mann et al., 2018; Porsdam Mann, Donders, and Porsdam, 2020). Thus, it was acknowledged that science is important for the fulfilment of other human rights duties, but also that it has value of its own.

The RtS has wide applicability across themes at the intersection between science, society and the individual. Part of its promise lies in its universal nature: since the RtS is a human right, everyone is, in theory, equally entitled to enjoy it. The idea is that, barring good reasons to the contrary, everyone should be able to enjoy access to the benefits of the progress of science and its applications. By comparison, the standard framework for regulating access to scientific materials and output today is based on intellectual property protection, which is exclusionary in nature. Here, the idea is that, barring good reasons to the contrary, no one should be allowed access to the benefits of scientific progress unless they are willing and able to pay.

Our aim has been to provide a sketch of a framework for the assessment of policies according to their compliancy or otherwise with the obligations imposed by the RtS. One of the strengths of our model is that it has been developed using only pre-existing concepts and instruments, which should be largely uncontroversial, and should facilitate the evaluation of human rights implications by those familiar with these tools.

In the first step, general definitions are brought to bear to determine whether an issue or policy proposal falls within the scope of the RtS. The second step involves figuring out whether any of a set of proposals fulfils the RtS, and if it does not, whether the options are best classified as derogations, retrogressive measures, or limitations. In step three, commonly accepted human rights instruments and concepts are used to determine the legitimacy of proposed policy options. The fourth and final step then simply requires the choice of the best possible remaining option.

A policy option that makes it all the way through the four-step test fulfils the following criteria: it is enacted according to the rule of law; and it is the option which produces the greatest amount of general welfare in a democratic society out of the set of options which are based on science, compatible with the nature of economic, social and cultural rights, respect fundamental human rights principles, and are balanced according to their impact on the enjoyment of all human rights. Beholden to the general and individual interest, it is our contention that any such outcomes are likely to be superior to the criteria according to which current science policy is determined.

Our hope is that by bringing together different schemes, including the General Comment No. 25 and academic reflections, this sketch has contributed toward building a useable framework that may help activate the RtS in practice.

14 The Right to Science A Practical Tool for Advancing Global Health Equity and Promoting the Human Rights of People with Tuberculosis

Mike Frick and Gisa Dang

“We need research, not hysteria!”

– Banner at New York City Gay Pride, June 1983¹

“We need good science like we need clean water.”

– Glenda Gray, president, South African Medical Research Council, 2016²

Human rights play a tremendous role in successfully tackling communicable diseases worldwide. The application of the right to health with the rights to nondiscrimination and participation has created pathways for civil society involvement in the design, implementation, and oversight of health programs, and has created space to grow social movements in the global health sphere. Activists in the HIV/AIDS movement, such as the ACT-UP members quoted in the above epigraph, realized early in the course of the HIV epidemic that science, health, and human rights are inextricably linked; and that, in fact, the combination of scientific progress and respect for human rights will be essential for achieving an AIDS-free generation. Scientists working on infectious diseases have themselves voiced the intrinsic human rights dimensions of science, exemplified by South African Medical Research Council president Glenda Gray’s comparison of good science to clean water; both are public goods and basic requirements of a life with dignity.

Given the deep connections between science and rights, one might assume that the right to science has provided a rallying point for social movements tackling health and human rights issues. The right to science – established by Article 27 of the Universal Declaration of Human Rights (UDHR) and Article 15 of the International Covenant on Economic, Social, and Cultural Rights (ICESCR) – speaks to many of the freedoms and entitlements at the heart of global health movements.^{3 4} Yet, the size and success of the HIV/AIDS movement remains exceptional; similar movements have not coalesced around other infectious diseases to the same extent. (The COVID-19 pandemic may yet spark social mobilizations rivaling the size and durability of those against HIV/AIDS, a potential explored in an addendum ending this chapter.) Nor has the right to science been analyzed in any form that comes close to matching analyses of the right to health advanced by civil society, scholars, and the United Nation (UN) system.

Consistent with the interrelation of human rights, the right to science cannot be entirely separated from the right to health and other rights, but is in fact a complementary right. Yet, global health advocates have so far not claimed the right to science as a practical tool for securing health and human rights. In this chapter, we show the importance of undertaking a detailed, applied analysis of the right to science for the elimination of tuberculosis (TB) as the world’s deadliest infectious disease. We analyze the access and participation dimensions of the right to science, departing from a traditional right to health analysis to supply a workable entry point for advocacy for the global TB response. The discussion of two ethical pillars of participation – inclusion and reciprocity – illustrates how promoting the meaningful involvement of marginalized communities in TB research is a prerequisite for states’ abilities to fulfil their obligation to ensure all people can enjoy the benefits and applications of scientific progress. The final section presents examples illustrating how activists have begun to invoke the right to science as a basic human right. These cases demonstrate the importance of disentangling the right to science from the right to health, even while acknowledging their interrelation, in order for this right to become a truly powerful avenue for advancing global health equity.

14.1 TB Research: In Search of State Attention

TB has killed more people than any other infectious disease in human history and remains the leading cause of death from a single infectious agent globally.^{5 6} In 2018, 10 million people developed TB and 1.3 million died from the disease. The deadly persistence of TB stems, in part, from the failure of scientific advances to keep pace with an epidemic that has evolved both in response to and away from last century’s medical interventions. Over time, TB has grown more difficult to treat and formed syndemics (i.e., epidemics that occur together and magnify each other’s effects) with other global health threats such as HIV and diabetes. A review of TB research investments by the World Health Organization (WHO) concluded: “The present and future threat TB poses to human health is mainly a consequence of the enormous neglect the TB research field has experienced over the past several decades.”⁷

This neglect reflects chronic underinvestment in research and development (R&D). There is a lack of scientific innovation in TB due to insufficient funding by the public sector and limited and diminishing activity by the pharmaceutical industry.

At the 2018 United Nations High-Level Meeting on TB, UN member states committed “to mobilize sufficient and sustainable financing for research, with the aim of increasing overall global investments to US $2 billion [per year] … ensuring that all countries contribute appropriately to R&D.”⁸ (The $2 billion annual target was first set by the Stop TB Partnership in 2006.) An annual survey of TB expenditures by public, philanthropic, private, and multilateral institutions conducted by Treatment Action Group (TAG) over the last fourteen years shows that annual investments in TB R&D have fallen far short of this $2 billion target, never exceeding $900 million in any given year.⁹ This points to states’ failure to support science, either by failing to directly fund TB research, or by not putting in place legislative, regulatory, and policy frameworks able to attract investment by other sectors.

In 2017, less than 0.1 percent of the estimated $97.2 billion spent on R&D by the pharmaceutical industry went to TB.¹⁰ This is the consequence of a biomedical innovation system driven by market returns rather than public health need; any system focused on commercializing innovation for profit will direct few resources to TB and other diseases of poverty.^{11 12} TAG’s data document a clear decline in this already limited TB research spending by pharmaceutical companies and an increasing reliance on the public sector to fund TB R&D.¹³

Although public money underwrites most TB research projects, pharmaceutical companies often retain control over research outputs. Responding to this, activists have demonstrated how the public pays three times for TB innovation.¹⁴ First, to fund the research itself. Second, to purchase resulting technologies at prices set by pharmaceutical companies, which hold intellectual property on publicly funded innovations. And then again when these same companies that benefit from public research dollars deplete public budgets through tax evasion schemes.¹⁵ When research produces breakthroughs, these tools are priced out of reach or otherwise remain unattainable for most people with TB. This reveals the importance of recognizing access as a cornerstone of the right to science.

14.2 “The Right to Science Connotes, First of All, a Right of Access”

Thus wrote former Special Rapporteur (SR) in the field of cultural rights, Farida Shaheed, in her 2012 report to the Human Rights Council.¹⁶ Legal scholars such as Lea Shaver have similarly described access as “the touchstone concept of the right,” inherent in its earliest formulations, and visible in the way UDHR Article 27 speaks of the right of everyone “to participate in cultural life,” “to enjoy the arts,” and “to share in scientific advancement and its benefits.”¹⁷

Determining what constitutes access under the right to science is critical to turning this right into an entitlement that individuals can claim, and into a tool that activists can use to hold states accountable for meeting their attendant obligations. Under international human rights law, access is composed of multiple dimensions, and “the dimensions of access require some adaptability from right to right.”¹⁸ General Comment No. 14 of the Committee on Economic, Social and Cultural Rights (CESCR) describes access under the right to health as encompassing four domains: nondiscrimination, physical accessibility, economic accessibility (affordability), and access to information.¹⁹ In the 3AQ framework, accessibility sits alongside the availability, acceptability, and quality of health facilities, goods, and services as an essential element of the right to health in all its forms and at all levels.

In General Comment No. 25, CESCR related the 3AQ framework to the right to science and added a fifth element: the protection of freedom of scientific research.²⁰ The application of the 3AQ framework to the right to health has greatly clarified the nature of state obligations with respect to access. The analysis of access in General Comment No. 25 also reflects the work of scholars and activists to sketch the dimensions of access under the right in the lead up to CESCR issuing this authoritative legal interpretation. In keeping with one of the foundational principles of international human rights law, access must satisfy the requirement of nondiscrimination (e.g., ICESCR Article 2.2). The treaty language in Article 15 describes scientific progress in terms of both its “benefits” and “applications.” This strongly suggests that access extends beyond general knowledge to encompass tangible applications of science.²¹ Similarly, Audrey Chapman has said that the term “benefits” should be understood as including “material benefits,” and that a human rights approach requires attention to how these benefits are distributed to disadvantaged communities.²² Shaheed condensed these ideas into the powerful statement that “innovations essential for a life with dignity” must be accessible to everyone.²³

This idea has provided a powerful hook for TB activists seeking to connect people affected by TB to the tangible outputs of science in the form of new drugs, diagnostics, and vaccines. This is familiar territory. The phrase “innovations essential for a life with dignity” contains echoes of the term “essential drugs,” provision of which is a core obligation under the right to health.²⁴

TB activists have intuited the importance of not narrowly defining access as meaning only material benefits. Just as people with TB need new drugs, scientists need access to data, samples, and compounds. The right, therefore, must encompass the ability of scientists to access the means, methods, and tools of discovery. And both scientists and the public need access to intangible forms of knowledge and information. This idea is represented by the “continuum of access” developed by the American Association for the Advancement of Science (AAAS), which depicts access as stretching from the public on one side to scientists on the other.²⁵

Accordingly, TAG has previously framed state obligations to address TB under the right to science in line with Article 15.2 of ICESCR,²⁶ which establishes the conservation, development, and diffusion of science as state obligations. By combining all three, Article 15.2 lays out a concept of access that connects state support for science (development) with the equitable distribution of the benefits and applications of scientific progress (diffusion) and efforts to ensure that these benefits are lasting (conservation). In this context, we understand conservation as meaning that the benefits of science are available not only to people alive today, but also to future generations.²⁷ We argue that a state that satisfies its obligation to develop science without supporting diffusion and conservation has not created the conditions necessary for access.

14.3 Participation in Science Is a Prerequisite to Accessing the Benefits of Scientific Progress

Participation is one of the animating values of the right to science and is directly linked to access. Most obviously, participation in relation to science refers to the ability of scientists to engage in the scientific endeavor. But it also speaks to the ability of nonscientists – including research participants and the intended beneficiaries of science – to have a voice in decision-making about science.²⁸ In her 2012 report, Shaheed identifies the participation of individuals and communities in decision-making about science as a key element of the right’s normative content.²⁹ Participation is so central to the right to science that in General Comment No. 25 CESCR added the word participation to the longform name of the right itself: “Thus, it is the right to participate and to enjoy the benefits from scientific progress and its applications.”³⁰

Participation protects people, especially marginalized populations, against scientific misconduct and the possible harms of technological development. It also creates opportunities for communities to advocate for research that addresses their needs and priorities. In order for this advocacy to be successful, communities must first find firm footing and representation among the many actors involved in doing science. In TB research, modeling the HIV approach, this representation has often advanced through community advisory boards (CABs). These groups are comprised of research-literate community members including people with TB, survivors of TB, affected family, local health activists, religious leaders, and other stakeholders.³¹ CABs operate in an advisory capacity to research networks and sponsors of clinical trials and seek to raise community perspectives within funding bodies and scientific fora. These perspectives span issues of trial design, study conduct, results dissemination, and concerns about access to investigational technologies.³²

When a CAB proposes a new study, objects to the exclusion of a particular population from a trial, questions the utility of a study procedure, or poses a research question to be examined, it is performing an important act of translational advocacy. This connects the objectives of scientists with interests vital to the communities for whom, and in which, research is conducted. If done well, the result is a dialogue between scientists and community representatives that produces value for both sides. For this dialogue to unfold, scientists themselves must recognize community expertise for what it is: a different way of approaching knowledge production, but one with equal legitimacy. More often, TB researchers have treated CABs either instrumentally (one common misconception is that community advisors exist only to promote the enrollment of participants into clinical trials), or have viewed them as stakeholders to placate before the real work of science can get underway. Confronting this dynamic has required CAB members to build their own knowledge of research in order to effectively advocate for community priorities with scientists on their own terms.

The experiences of two CABs coordinated by TAG – the Global TB Community Advisory Board (Global TB CAB) and the Community Research Advisors Group (CRAG) – illustrate how community participation has changed the direction of TB research. The Global TB CAB is a group of community-based activists from HIV and TB networks around the world that engages product developers, pharmaceutical companies, and public institutions conducting clinical trials of TB drug regimens, diagnostics, and vaccines.³³ The CRAG advises TB research conducted by the U.S. Centers for Disease Control and Prevention (CDC). Both groups have employed the early review of clinical trial protocols to influence studies before they begin. In 2016, the Global TB CAB and CRAG examined their feedback on protocols for thirteen late-stage TB drug trials to identify common areas of concern and document the impact of community review. They found that study protocols routinely failed to address the following scientific and ethical concerns of high priority to communities: plans for results dissemination; post-trial access to investigational products; adequate composition (or even presence) of control arms; use of non-stigmatizing language in study documents; and the appropriate inclusion of key populations disproportionately impacted by TB, including people living with HIV (PLHIV), children, adolescents, and pregnant women.³⁴

Community activists have made partial, but significant, progress on all of these fronts. For example, the CRAG successfully advocated with investigators planning a phase III trial of a shorter TB regimen to broaden the eligibility criteria to include PLHIV and adolescents.³⁵ The CRAG argued that since TB incidence is higher in young people and in PLHIV, it is important to assess new drug regimens in these populations. In another instance, the Global TB CAB won changes to the protocol of the STREAM study – at the time the largest drug-resistant TB treatment trial in history – by sharing concerns about the choice of the control arm in relation to the global standard of care.³⁶ Following this interaction, the study’s investigators launched a robust program of community engagement at trial sites and supported the start-up of several local CABs.³⁷

What motivates the work of the Global TB CAB, CRAG, and other TB community advisory structures is the hard-earned knowledge that participation in science is a prerequisite to accessing the benefits of scientific progress. The link between participation and access is rooted in two fundamental components of participation: inclusion and reciprocity.

14.3.1 Inclusion: Nothing About Us without Us

In global health movements, inclusion is often expressed through the organizing slogan “nothing about us without us!” The right of people affected by a disease to participate in all decisions concerning their lives has been a core tenant of global health advocacy since the formulation of the 1983 Denver Principles. Rejecting the passivity of labels such as “victims,” “patients,” or “subjects,” a coalition calling itself People with AIDS laid out a foundational vision of self-determination, autonomy, and empowerment.³⁸ This vision included the right of people with AIDS to “be involved at every level of decision-making;” to “be included in all AIDS forums with equal credibility as other participants;” and to receive “full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment, and to make informed decisions about their lives.”³⁹

The standard of inclusion articulated in the Denver Principles has become the guide star for an epistemic community working to ensure that global health centers people affected by HIV, TB, and other illnesses. In the context of HIV/AIDS programs, this philosophy is called the “greater involvement of people with AIDS” (GIPA).⁴⁰ In the setting of research, an odd kinship of grassroots activists, CABs, funders, scientists, and clinical trial participants has sought to enshrine “good participatory practice” (GPP) as an essential part of ethical medical research. Today, there are guidelines on GPP for HIV prevention research, TB drug trials, TB vaccine research, and trials on emerging pathogens.^{41 42 43 44} These guidelines provide researchers with a roadmap for meaningfully engaging communities at each stage of a clinical trial. GPP complements existing regulatory standards such as Good Clinical Practice. It sits alongside – though does not replace – other participatory research methods, including participatory action research and community-based participatory research.⁴⁵

Participation in science also functions as a prerequisite for accessing the benefits and applications of scientific progress. While the Denver Principles articulated the right of People with AIDS to decline research participation – recalling the bioethical precepts of autonomy, and free and informed consent – just as often the fight is about gaining inclusion in the scientific agenda. The systematic exclusion of certain groups from research is a form of marginalization that reinforces disparities in which some populations shoulder a greater burden of TB than others. Activists have shown how TB clinical trials favor enrollment of “typical” TB patients with easier-to-treat forms of disease.⁴⁶ As a result, people with complicating comorbidities (e.g., HIV, diabetes) or severe disease manifestations (e.g., TB meningitis) are left out of trials. Other groups such as children, adolescents, and pregnant women are excluded out of a misplaced desire to protect vulnerable populations from harm.

In actuality, research protection interpreted as exclusion amplifies TB-related harms. Evidence-based guidelines cannot be made in the absence of evidence that an intervention works in a particular population. Some of the populations most vulnerable to TB are either not represented in normative guidance produced by WHO, or must wait years for well-established interventions to be recommended for their use. The CRAG and TB CAB mobilized to increase the inclusion of pregnant women in TB research, arguing that the risks inherent to research must be weighed against potential benefits as well as the predictable harms of not conducting research in pregnant women. “In the absence of research, each pregnant woman treated for TB becomes an individual experiment,” CAB members argued. “Approaching each pregnant woman with TB as an experiment with a sample size of one precludes conducting the systematic research needed to produce the generalizable knowledge necessary to improve clinical care for all pregnant women with TB.”⁴⁷ Rather than policies of blanket exclusion, the TB CAB and CRAG argued that researchers should presume pregnant women eligible for research participation and then provide specific ethical and scientific justification to support ineligibility. Thus, participation as inclusion constitutes an essential condition by which states can deliver on their obligation to provide all people with access to innovations essential for a life with dignity.

TB activists are not alone in confronting the unfairness through which exclusion from research results in the benefits of science accruing to some groups over others. AIDS activists have pointed out that HIV treatment and cure trials enroll more white gay men than women, transgender people, or people of color.^{48 49} That HIV and TB activists framed research inclusion as an issue of justice is thanks to the work of feminists and communities of color in the United States to secure policies from the National Institutes of Health and Food and Drug Administration (FDA) requiring the inclusion of women and racial minorities in clinical trials, and the analysis of data by gender and race.⁵⁰

14.3.2 Reciprocity: From “Do No Harm” to Repairing Harm

Alongside inclusion, the concept of reciprocity is important for understanding state obligations with respect to participation under the right to science. Bioethicists have defined reciprocity as “returning goods in proportion to those received and compensating those who have been harmed.”⁵¹ Diego Silva and colleagues have used this notion of reciprocity to examine state obligations to people with TB who must endure periods of involuntary isolation or detention to limit the risk of transmission to others. They argue that reciprocity is more than a “thank you;” it is “a means of society and the state accepting responsibility for the conditions that have led to infection and disease from TB.”^{52 53} To the extent TB is a disease of poverty, the state has an obligation to compensate people with TB for harm caused by the state’s failure to ameliorate the conditions that give rise to TB and disproportionately distribute its harms.

In the context of research, that is, development under the right to science, the concept of reciprocity helps elucidate rights and responsibilities. Individuals who enroll in clinical trials assume real risk in exchange for benefits that are by definition unknown and not guaranteed. Communities that host research provide a valuable social good to scientific endeavors that are often led by scientists or pharmaceutical companies in the Global North. Through such participation, these individuals and communities create the conditions under which science advances. Recognizing a right to enjoy the benefits of scientific progress creates the possibility of reciprocity in this exchange.

To borrow Silva’s reasoning that reciprocity creates the grounds for acknowledging state responsibility to repair harm: the clear connection between the lack of support for TB R&D and the continued toll that TB exacts further compels states to support the conservation, development, and diffusion of science and its benefits. Supporting the purposive development of science and technology for TB is a way for states to address harms arising from the inadequate tools and lack of innovation underlying the TB epidemic. This responsibility is shared by all states. As Cristian Timmermann points out, it is hardly forward-thinking to treat one part of the world as that which does science and another as that which receives it: “There is a huge amount of unacknowledged reciprocity for inventions placed in technology-dependent societies. Developers of technologies gain many insights from their users.”⁵⁴ An ethic of reciprocity arises from the participation of individuals in research; this contribution creates an obligation by states to ensure that the benefits of research are equitably shared, again linking participation and access.

14.4 Creating Accountability Through Advocacy

How have TB advocates used the above framework to hold governments accountable to meeting their obligations under the right to science? Over the past three years, TAG has sought opportunities to promote knowledge of the right to science within the UN system and among fellow advocates. As is clear from the above analyses of participation and access, the right holds tremendous potential for giving new impetus to the global TB response by focusing state attention on the development of new tools and interventions with meaningful community participation and through means that ensure the equitable diffusion of these advancements. Since human rights are interrelated, interdependent, and indivisible, the right to science also provides a new lens through which activists can frame issues they have been trying to change for decades.

14.4.1 Working with United Nations Mechanisms

One immediate barrier to realizing this potential is the absence of writing that analyzes specific issues using a right to science lens or attempts to take such analyses from international law into the realm of domestic law and local health policy. Therefore, TAG identified several UN mechanisms that would provide the opportunity to analyze TB as a human rights issue under the right to science.

The UN system provides several channels through which human rights violations can be brought to light. One mechanism is the Universal Periodic Review (UPR), which regularly reviews the human rights record of each member state and which allows for parallel submissions by civil society that feed into the official UPR documentation for each country. TAG wrote submissions for the third cycle UPR of three countries: China (2018),⁵⁵ Mexico (2018),⁵⁶ and the United Arab Emirates (2017).⁵⁷

TAG’s United Arab Emirates (UAE) UPR submission grew from statements by migrant workers deported from the UAE for signs of TB based on a flawed diagnostic algorithm deployed in mandatory medical exams for work permit applications. We wrote a succinct analysis of how the public health policies governing TB screening and the laws directing its application in immigration proceedings failed to meet international scientific and human rights standards. TAG delivered an oral intervention at the UPR pre-session in Geneva, and has since engaged with the special procedures mechanisms to push for legal protections against deportation on the basis of TB or other health status. The issue of TB and migrant health screening in the UAE lent itself well to an analysis spanning the diffusion of scientific progress (i.e. TB screening according to global scientific standards) and related rights such as health, information, and nondiscrimination. Through this analysis, TAG hoped to showcase how the right to science contributes to an understanding of the rights of migrants with the explicit goal of influencing UN bodies that may not recognize the right to science as relevant to their missions.

For the UPR of China, TAG’s submission analyzed China’s response to drug-resistant TB (DR-TB), showing how in responding to its DR-TB epidemic, China had failed to both diffuse existing tools for confronting DR-TB to all people in need and develop improved tools through investments in research. As a country that heavily restricts civil society activities nationally, and aims to limit the activity of global civil society with regards to its human rights record and conduct, China exemplified the connection of the right to science to the right to participation, as well as to freedoms of association and assembly.

TAG’s experience raising right to science issues in the third-cycle UPR has led to the realization that even within the UN system there remains a great distance to travel before the right to science gains wide recognition and acceptance. In particular, TAG has faced challenges disentangling the right to science from the right to health, which many observers may find more immediately applicable to the context of TB. One case in point: despite TAG’s UPR submission for China supplying a right to science analysis, in the summary of stakeholder submissions, TAG’s submission was mentioned under the subheading of right to health, without any mention of the right to science.

14.4.2 Linking Conservation, Development, and Diffusion

TAG has called out insufficient funding for TB research as a failure of governments to live up to their obligation to develop science.^{58 59} One concrete solution activists have proposed to increase state attention to TB R&D is the Life Prize. The initiative seeks to foster open collaboration among different companies, drug developers, and governments to develop a one-month regimen for treating TB that is affordable and available to all. To accomplish this, the Life Prize would deploy three mechanisms: pull incentives that reward early-stage research on compounds through milestone-based prize funds; a pool for data and intellectual property so that compounds held by different companies can be developed together without patent barriers; and push incentives (e.g., grant funding) for the clinical development of candidate regimens.⁶⁰ Money for the prize funds and grants would come from governments, a form of international collaboration encouraged by Article 15.4 of ICESCR.⁶¹

By combining push, pool, and pull mechanisms, the Life Prize seeks to separate the costs of research and development from the prices and sales volumes of final products.⁶² In doing so, it would promote the affordability of medicines by eliminating the need of manufacturers to recoup R&D investments with high prices and patent-protected monopolies. In spurring R&D without relying on market-based incentives, the Life Prize creates the conditions for a more equitable approach to innovation, one that sees scientific development and widespread diffusion as equal, complementary goals.

The Life Prize also provides a useful framework for thinking through the conservation of science in the context of infectious diseases. One pernicious debate circulating in the TB field pits antibiotic stewardship aimed at preventing drug resistance against universal access to medicines. This framing arises from the real urgency of confronting DR-TB and the well-intentioned desire to stem drug-resistance by limiting the improper use of TB medicines. In effect, however, this stance frames conservation not in terms of access, but exclusion. In doing so, it loses sight of the pressing reality that only one in four people who develop DR-TB in any given year have access to treatment.⁶³ It also obscures the roots of DR-TB, blaming patients for nonadherence to regimens or prescribers for antibiotic misuse. Scientific evidence points in another direction. Sequencing of clinical isolates from DR-TB outbreaks suggests “drug-resistant strains circulating today reflect not only vulnerabilities of current TB control efforts but also those that date back 50 years.”⁶⁴ Instead of recognizing this historical legacy, when treatment fails, as it often does in TB, the assumption is that patients are nonadherent while medicines are always efficacious. In actuality, many existing TB drugs have little efficacy, and many adherence challenges stem from the toxic side effects of the medicines themselves or the long duration of treatment.⁶⁵ TB activists have tried to shift this narrative of individual blame by keeping the onus on governments to plug the glaring treatment access gaps that deny so many people with DR-TB effective therapy.

TB researchers and clinicians Jennifer Furin and Madhukar Pai have called out the “tension between wanting to ‘protect the new drugs’ as opposed to protecting the lives of patients, with the drugs being restricted in order to purportedly preserve their efficacy.”⁶⁶ This perverse logic is so endemic in the TB field that within hours of the FDA approving a new regimen with novel antibiotic pretomanid to treat the most resistant strains of TB in 2019 there was talk of “saving” pretomanid from resistance. Heralding the FDA approval, the director of the largest NGO provider of TB technical assistance globally said: “Responsible use of pretomanid-based regimens needs to be ensured. After all, we have to protect our new medicines!”⁶⁷ TB activists responded differently. They pointed out that pretomanid was developed with public and philanthropic funding and was therefore a “public good.” In addition, while acknowledging critical research gaps precluding wide use of pretomanid, activists called for its evidence-based introduction for patients in need according to a set of minimum terms.⁶⁸ Activists also called for additional research on the drug, particularly regarding its safety profile and use in special populations such as children.

The example of pretomanid, and other newer TB drugs, underscores the need for a new model of R&D, one able to link scientific development with equitable diffusion. One in which access is understood as part of conservation rather than anathema to it. The Life Prize would address the real need to safeguard the efficacy of news drugs against the development of drug-resistance without trading access for conservation. Regimens developed by the Life Prize would be licensed to manufacturers, on a nonexclusive basis, with the terms of the license setting quality standards and expectations for pharmacovigilance.⁶⁹ Unfortunately, governments have not yet stepped forward to fund this proposed model.

14.4.3 Upholding the Right to Science through Strategic Litigation

One accountability tactic that has not been tried in TB is litigation on behalf of an individual claiming the state has failed to uphold their right to enjoy the benefits of scientific progress. Citing the lack of court cases in which individual petitioners invoke the right to science, Leslie London et al. argue that the right “does not entitle individuals to direct enforceable benefits of scientific progress” by, for example, compelling a state to develop a new drug to treat DR-TB.⁷⁰ In their view, the right to science is realized collectively: people are entitled to the adoption of legislative and policy frameworks aimed at making the benefits of scientific progress available and accessible.⁷¹

It may be premature to conclude that the right to science is not individually actionable when the justiciability of the right has not been thoroughly tried and tested. As normative consensus on the meaning of the right builds, and as activists, lawyers, and governments become more familiar with entitlements and obligations under Article 15, its potential use in individual litigation will only grow. Even now, it does not require a great deal of imagination to envision how petitioners could make claims under the right to science to argue that states have failed to meet their obligations to conserve, develop, and diffuse the benefits of scientific progress in the context of specific public health emergencies.

As an illustrative exercise, one can read the right to science into existing cases that cite the rights to health or life to argue that an individual or group has a right to access prevention or treatment. Two examples concerning TB come from recent court cases in India. In the first, the Indian Supreme Court directed the government’s national TB program to replace the prevailing thrice-weekly administration of TB medicines with daily administration of fixed-dose combination tablets.^{72 73} The ruling followed a public interest litigation filed by physician Raman Kakkar, who had documented that giving TB treatment three times a week (a practice that set apart India from global guidelines recommending daily pill taking) resulted in higher rates of treatment failure by making it difficult for patients to adhere to treatment.⁷⁴ In his complaint to the court, Kakkar described the thrice-weekly protocol as “unscientific” and linked it to deaths among TB patients in his district of Faridabad.⁷⁵ Through a combination of his own systematic research and an appeal to international scientific standards, Kakkar argued that the Government of India had failed to keep its TB treatment policies aligned with evolving evidence on what constitutes the highest attainable standard of care.

The second example is one of the most prominent court cases concerning TB in recent years. Kaushal Tripathi, the father of a young woman with extensively drug-resistant tuberculosis (XDR-TB), sued a public hospital so that his daughter, Shreya Tripathi, could access a new TB drug, bedaquiline.⁷⁶ First diagnosed with TB in 2013, Shreya likely developed XDR-TB after years of ineffective treatment following a series of incorrect diagnoses. By 2017, the TB strain threatening Shreya’s life was resistant to almost every available drug. Facing the end of her life, Shreya and her father traveled from their home in Patna to the Lal Ram Sarup TB Hospital (LRS) in New Delhi, where bedaquiline was available under a conditional access program run by the Indian government at six public hospitals throughout the country. The hospital declined to treat Shreya with bedaquiline, citing a condition of the program: that patients demonstrate legal domicile in the location of the clinic.⁷⁷ With her official residence registered as Patna, Shreya was ineligible to receive bedaquiline in Delhi.

Represented by the Lawyers Collective, Kaushal Tripathi sued LRS for access to bedaquiline for his daughter, arguing that denial of treatment was unconstitutional based on Shreya’s fundamental rights to health and life. LRS authorities argued that the TB sickening Shreya was so resistant that it was impossible to construct a sufficiently strong regimen of other TB drugs.⁷⁸ Under these circumstances, giving Shreya bedaquiline would create the opportunity for her strain of TB to develop resistance to the drug – resistance that could spread to others in the community. The efficacy of bedaquiline for other people would thus be “lost.” Amicus curiae submitted by a prominent TB doctor argued the opposite: that the dilemma between saving drugs versus saving lives is a false choice.⁷⁹ In order to protect the public from XDR-TB, the hospital needed to give Shreya bedaquiline as a matter of urgency. The most effective way to stop the spread of TB is to provide treatment, since once someone starts effective therapy the bacterial count in the body drops and onward transmission is less likely.

In a settlement between parties, the government agreed to grant Shreya access to bedaquiline and “to make clear that domicile or residence of the patient is not a criterion for the eligibility of bedaquiline for its administration.”⁸⁰

Shreya’s XDR-TB was cured, but the access delays proved fatal. By the time Shreya received bedaquiline, her lungs were irreparably damaged; she passed away in October 2018 at the age of nineteen. The loss of Shreya’s life is a painful demonstration of how restrictive government access policies turn people with treatable XDR-TB into terminally ill patients by denying them access to new drugs saved for use by future others. The public health goal of sparing drugs from resistance becomes an imperative setting conservation against access. Recognizing a right to science would shift this frame by positioning conservation as one obligation of governments on the same plane of concern as other dimensions of access, including the development and diffusion of scientific progress and its benefits.

14.5 The Right to Science: Future Promise and Potential

If everyone has the right to enjoy the benefits of scientific progress and its applications then this enjoyment must ultimately be fought for, not just in courts but also in communities. Advancing the critical community education and mobilization required to turn the right to science from an underappreciated normative framework into a genuine tool for accountability will not be easy. Looking back at the quotes opening this chapter, and considering the above analyses, we are surprised that this right remains so under-utilized in global health advocacy. While still largely unreferenced in global public health, the right to science is slowly shrugging off its label of being a “forgotten human right,” as described by Audrey Chapman in 2009.⁸¹ However, this emergent awareness has traveled farther in academic circles than among civil society and human rights practitioners.

In part, this may reflect the structure of the international human rights system. While the international covenants and UN bodies offer many entry points for advocating for human rights, the nature of the system can encourage specialization. Thus advocates fluent in the right to health rarely connect these issues to the right to science. Many may have never heard about the right to science before; even among scientists whose work incorporates human rights analysis, the right to science is not well-known. This is one reason why the right to health remains the trusted analytical framework for advocacy in the realm of global health, even though the right to science may be able to make more direct claims regarding the accessibility of innovations. CESCR’s issuance of General Comment No. 25 will draw greater attention by states and civil society to the right to science. We hope that it will, like General Comment No. 14 on the right to health (2000), yield new avenues for action and accountability, while enabling scholars and practitioners to begin to disentangle the right to science from the right to health.

Whether this attention leads to litigation, and whether the right to science joins the right to health as a tool for increasing access to medicines and other innovations essential for a life with dignity, will depend on mobilizing communities around the human rights dimensions of science. This will require dedicated efforts to raise awareness of the right among communities and translate its entitlements into actionable rights claims. Through efforts by TAG and other civil society actors, the right is slowly gaining more recognition in the TB response. For instance, the 2018 Declaration of the Rights of People Affected by Tuberculosis includes the right to science.⁸² Yet even this community document, in its aim to appeal to an international audience and maintain broad applicability, uses high-level language that will require the development of additional resources to bring the concepts into local contexts so that the right to science may become a tangible form of knowledge and thus community power. Herein lies the responsibility of scholars to translate academic work on the right to science into persuasive arguments and accessible language that activists can use to create tools to turn the right from a set of promises on paper into entitlements claimed, contested, and fulfilled.

The idea of promises – which can be broken or fulfilled, pursued or abandoned – is an instructive angle from which to think about the future conjoining of science, human rights, and TB. Bharat Venkat has said that the always-present possibility of drug-resistance, relapse, or reinfection after TB treatment means that cures for TB “might be better conceived of as endings lacking finality … a promise rather than a rupture … a promise that, like all promises, can be broken.”⁸³ Understanding TB cure as contingent rather than assured acknowledges that scientific progress cannot be taken for granted. The TB of today is different from the TB of yesterday. The scientific advances ushered in by germ theory, the microscope, the antibiotic revolution, the mapping of the human and Mycobacterium tuberculosis genomes, and other leaps forward in knowledge have given us new tools and vantage points from which to fight TB.

Our tools will need to keep evolving. Keeping the promise of cure alive will always depend on science progressing. Writing nearly twenty years ago, Paul Farmer observed: “even as our biomedical interventions become more effective, our capacity to distribute them equitably is further eroded.”⁸⁴ If we can share the fruits of scientific advancement more equitably in the future than we have in the past, then we may move closer to fulfilling the promise of lasting cure. Promises can be broken, but human rights must be fulfilled. The right to science has given individuals confronting TB a way to bring together the development, diffusion, and conservation of scientific progress in a unified vision for ending this deadly epidemic.

14.6 Addendum – the Right to Science and COVID-19 – April 2020

We began revising this chapter as the COVID-19 pandemic reached its staggering scale, shutting down societies across the globe. Writing under lockdown from our homes in New York City and the California Bay Area, we are struck by how the right to science provides a uniquely clarifying framework for thinking through a human rights-based response to this new global pandemic. This moment in late April 2020 is likely to be remembered as the ferocious opening chapter of an epidemic of unknown length. Against this indeterminate time horizon, TB advocacy provides instructive lessons on what it will take to sustain scientific progress against COVID-19 – not over months, but years.

Past experiences from TB and HIV advocacy illuminate possible paths for translating scientific advances against COVID-19 into an effective, evidence-based, and equitable public health response. Presently, the weight of advocacy has settled on the equity proposition of COVID-19 research, or the extent to which scientific advances will be accessible to all who need them. Activists from diverse health movements have jointly called on governments to commit to making the benefits of COVID-19 research available to all without discrimination.⁸⁵ For example, recalling that Jonas Salk refused to patent the world’s first polio vaccine or grant exclusive rights to any single company, students and artists have formed “Salk teams” to devise creative ways to pressure universities, governments, and pharmaceutical companies to make tools against COVID-19 universally available at affordable prices.⁸⁶

Advocacy to promote the development, diffusion, and conservation of science in the TB space has prepared activists to play a watchdog role over the repurposing of existing medical technologies for COVID-19. Activists decried the high price of a SARS-CoV-2 diagnostic cartridge run on a decades-old platform developed for TB through mostly public funding.⁸⁷ Pointing out that the innovation race against COVID-19 has proceeded without robust community engagement, over 200 organizations issued a call for greater participation in COVID-19 R&D.⁸⁸ Several groups are now partnering to establish a global CAB to advise COVID-19 research endeavors.⁸⁹ Based on their experience with other epidemics, these activists understand the centrality of participation for global health equity.

Right to science principles are latent within many of these initiatives. Yet, most commentaries on human rights and Covid-19 available at the point of writing – including statements by UNAIDS,⁹⁰ scientists and academics,⁹¹ and activists – do not name the right. Thus, COVID-19 also presents an opportunity to raise awareness of the right to science as an analytical and organizing tool. Notably, a UNDP analysis applying lessons learned from the TB and HIV responses to COVID-19 explicitly points to the right to science, particularly its underlying value of transparency “as a critical enabler of both innovation of and access to health technology.”⁹²

COVID-19 has revealed the imperative of fostering greater international cooperation in science, of which transparency is one essential component. ICESCR Article 15.4 speaks of “international contacts and co-operation,” and General Comment No. 25 paragraph 82 explicitly references pandemics because, as we are currently witnessing, “a local epidemic can become very quickly a pandemic with devastating consequences.” States therefore should respond with transparency by “sharing the best scientific knowledge and its applications …”⁹³ States and global agencies have put forward several concrete proposals to facilitate greater information sharing and research collaboration (though these stand against rights-denying actions by other states to control information, privatize knowledge, trade collaboration for competition, and undermine global solidarity). To take one positive example, UNESCO held a meeting in March 2020 on international cooperation in the face of COVID-19 to discuss the potential of sharing knowledge – building on its two-year process to develop a Recommendation on Open Science.^{94 95} Another promising example is the proposal by the government of Costa Rica – endorsed by the WHO – to establish a voluntary pool of COVID-19 patents, data, and technology that could be shared for developing drugs, vaccines, and diagnostics.⁹⁶ We cannot help but hear echoes of the Life Prize concept for TB drug development in this proposal and hope that governments step forward to support it.

With no tests, treatments, or vaccines available at the outset of the pandemic, and with country after country struggling with similar dire situations (e.g., shortages of personal protective equipment, ventilators, testing reagents) within weeks of each other, it is clear that societies must rally around scientific progress as a fundamental human right. The future will depend on states working in collaboration with each other, the private sector, and civil society to ensure that the fruits of scientific innovation – be it medicines, diagnostics, or vaccines developed for COVID-19, TB, or other diseases – are affordable and accessible for all across the globe, just as the right to science demands.

15 A Proposal for Indicators of the Human Right to Science

Andrea Boggio and Brian Gran

15.1 Introduction

The human right to science has a long history. First recognized through Article 27 of the Universal Declaration of Human Rights, this right was codified in Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) in 1966. However, until recently, international bodies and scholars have not paid the requisite attention to this right. As a result, our understanding of its normative content is relatively underdeveloped. We do not yet fully apprehend its potential to bring about positive change to individuals’ lives and the communities in which they live. This right has the potential to bolster freedoms indispensable to science and culture, for example through education and through creative work. It may strengthen the freedom for scientists to collaborate and disseminate their research while protecting everyone from scientific harms.

As more scholarly attention is paid to this right, evidenced by the chapters collected in this volume, efforts must include the development of indicators to measure State Parties’ compliance with the obligations set by the ICESCR. A call to “identify appropriate indicators and benchmarks, including disaggregated statistics and time frames” is also included in General comment No. 25 on Science and economic, social and cultural rights.¹ According to the document, State parties must develop indicators and benchmarks that will “allow them to monitor effectively the implementation” of the right to science. In general, indicators are useful in assessing whether improvements are made over time, as well as how units, such as nation states, are performing in comparison to each other. Hunt contends that human rights indicators can enable a state to assess its progress toward implementation of a particular human right.² This is valuable, Hunt notes, to officials who can then adjust regulations and policies. Such assessments can be important when structures and processes are changed in the hopes of producing superior outcomes. People want to know whether modifications to laws and policies lead to improved outcomes. They want to know whether the application of additional resources leads to improved outcomes.

Indicators may provide evidence that changes are working, and also when they are not. Yet it is possible to place undue reliance on indicators, even to become “seduced” by indicators.³ Experts have raised questions about the use of indicators, particularly when examining human rights. They have criticized the potential for infatuation with indicators, as well as ignorance of valuable information that can shed light on and provide evidence of compliance with human rights obligations.

This chapter contributes to this movement by proposing a set of compliance indicators in respect of the human right to science. Developing these indicators is useful given that responsibilities and duties that State Parties bear in relation to the right to science are still relatively underdeveloped. The indicators we propose are an effort to better articulate these responsibilities and duties. They contribute to advancing the discussion of the normative content of the right and potentially to how State Parties report their compliance with their treaty obligations to the CESCR. This chapter therefore seeks to contribute to the volume’s overarching objective of investigating the human right to science. Considering the right’s importance, and that it has often been overlooked by scholars and policymakers, including the United Nations, the time has come to examine it more deeply and critically.

Following a review of the emergence of human rights indicators, this chapter examines utility of, and types of, indicators for economic, social, and cultural rights. It then examines indicators in relation to the human right to science, proposing a matrix of indicators of this innovative right (see Appendix A). The chapter concludes with a discussion of the utility of such indicators. What can indicators accomplish? What are downsides to establishing indicators for the human right to science?

15.2 The Emergence of Human Rights Indicators

Human rights monitoring bodies have been recommending the use of indicators to monitor compliance with and progress towards the realization of economic, social, and cultural rights for over thirty years. In its General Comment No. 1 (1989) on reporting by States parties, the UN Committee on Economic, Social and Cultural Rights (CESCR) called on States “to identify specific benchmarks or goals against which their performance in a given area can be assessed” and “communicate them as part of their reporting duties.”⁴ The goal of this exercise, according to the CESCR, was “to effectively evaluate the extent to which progress has been made towards the realization of the obligations contained in the Covenant.”⁵ Similar objectives appear in the work of other UN treaty bodies, human rights special procedures such as special rapporteurs, the Universal Periodic Review of the UN Human Rights Council, and in the recommendations of these bodies to the State Parties.

The emergence of human rights indicators is part of broader interest in indicators as tools for policymaking and political decision-making. Human rights indicators belong to a particular subset of indicators, legal governance indicators, which purport “to measure practices or perceptions of good governance rules of law, corruption, regulatory quality, and related measures.”⁶ The UNDP World Development Report, Freedom House’s Freedom in the World, the World Justice Report’s measurement of the rule of law, and the World Bank’s Doing Business Index are examples of well-known efforts to measure governance outcomes using legal indicators. Indicators of legal governance are used to measure the “implementation of human rights standards and commitments, to support policy formulation, impact assessment and transparency.”⁷ Measuring the gap between universally acknowledged standards and implementation efforts of national governments will contribute to the realization of the human right to science. Further, because indicators can measure such gaps for different countries over various time points, researchers can employ indicators to draw geographical and chronological comparisons of efforts to realize the human right to science.

The popularity of indicators has generated interest among social scientists.⁸ This literature describes indicators as the “technology of global governance.”⁹ Global governance is defined as “the means used to influence behavior, the production of resources and the distribution of resources” beyond a single state.¹⁰ According to Miller and Rose, “technologies” are mechanisms that constitute the process of governance. Indicators, scholars contend, have surged to the status of “technology” of global governance, and are used to set standards and to make decisions concerning governance matters that transcend a single state. Indicators have acquired this status for two reasons: they are efficient and consistent tools,¹¹ and appear, at least on their face, to be inherently bureaucratic rather than political, and thus devoid of the problems and contestations typically associated with political decisions in the global arena. These two reasons explain the success of indicators, a phenomenon captured effectively by Sally Engle Merry with the expression “seductions of quantification.”¹² Insights arising from Merry’s and others’ work¹³ are important to place human rights indicators in historical context and assess their role in human rights discourses. However, before we turn to human rights indicators, we want to first define what indicators are.

15.3 Defining Indicators

The Office of the United Nations High Commissioner for Human Rights (OHCHR) has defined indicators as “specific information on the state or condition of an object, event, activity or outcome that can be related to human rights norms and standards; that addresses and reflects human rights principles and concerns; and that can be used to assess and monitor the promotion and implementation of human rights.”¹⁴ An influential definition comes from Paul Hunt, former UN Special Rapporteur on the Right to Health: “a human rights indicator derives from, reflects and is designed to monitor realization or otherwise of a specific human rights norm, usually with a view to holding a duty-bearer to account.”¹⁵

More generally, Davis, Kingsbury, and Merry, propose that an indicator can be defined as follows:

A named collection of rank-ordered data that purports to represent the past and projected performance of different units. The data are generated through a process that simplifies raw data about a complex social phenomenon. The data, in this simplified and processed form, are capable of being used to compare particular units of analysis …, synchronically or over time, and to evaluate their performance by reference to one or more standards.¹⁶

This definition captures two important aspects of indicators: they are constructs and they simplify complex phenomena. Indicators are constructs in the sense that they do not exist in nature but are designed by human beings for a specific purpose, namely, to measure performance of units of analysis in reference to certain standards. A human right can be the unit of analysis, its realization the performance to be measured.

Further, indicators try to simplify complex phenomena. Human rights are multidimensional legal artefacts for which realization depends upon the activation of various institutional domains. Indicators are tools used to reduce the inherent complexity of each human right into “units” that lend themselves to measurement. Simplification is thus instrumental to measurement. However, indicators also enable analyses of human rights that add new dimensions of the reading of legal instruments, UN bodies’ reports, case law, and related sources. This analytical level is located midway between a general notion of the normative content of human rights and how such rights operate in specific cases. Compared to doctrinal analyses, such as how human rights are codified and interpreted, indicators open the door to analyses that consider human rights less formalistically, but look at how rights are realized at a level that is closer to the rights holders and authority responsible for implementing the rights. Compared to data documenting specific violations of human rights, indicators operationalize data to permit the assessment of human rights at a more holistic level than that of specific violations. Still, experts attempt to disaggregate data to identify discrimination across suspect categories, such as by gender, skin color, or age. Such discrimination, of course, runs contrary to the quality of universalism characterizing human rights.

15.4 Human Rights Indicators and the CESCR

Although indicators have been part of the human rights reporting discourse for thirty years, their conceptualization and use with reference to economic, social, and cultural (ESC) rights is recent and relatively unsettled. This is the result of history.¹⁷ The CESCR turned to indicators in the 1980s on realizing that ESC rights were not as developed as civil and political rights. The CESCR imagined that developing universally applicable, rights-specific indicators might bridge that gap and facilitate the development of the core content of ESC rights.¹⁸ Consequently, throughout the 1990s, the CESCR led efforts to develop universally applicable, rights-specific indicators. At that time, the Committee envisioned its role as the producer of such indicators.

After a decade of unsuccessful attempts to develop indicators, the CESCR abandoned their goal of producing them and repositioned itself as the auditor of state-produced indicators.¹⁹ This change in position is documented in General Comment 14, in which the CESCR stated that, as part of their treaty obligations, State Parties were required to monitor the realization of ESC rights on their own. To do so, they were required to create and use their own indicators, with the CESCR acting as the reviewer and auditor of those indicators. At the same time, the CESCR engaged the OHCHR as the expert body responsible for developing compliance indicators. After extensive consultation with international experts, the OHCHR reached a more limited goal and, in 2012, published Human Rights Indicators: A Guide to Measurement and Implementation (hereinafter “OHCHR Guide”), laying out the conceptual framework and a set of illustrative indicators with the idea that States would use them in reporting to the CESCR.²⁰ Indicators for the right to science are not among the illustrative indicators produced by the OHCHR.

Engaging the OHCHR resulted in the transformation of indicators from political constructs to technical ones.²¹ Based on its expertise, the OHCHR clearly indicated that ESC rights indicators must be designed and used primarily to monitor compliance with treaty provisions. Further, it distilled technical standards to which producers of indicators, such as State Parties and civil society organizations, should adhere. However, the OHCHR did not settle all questions regarding human rights indicators. The OHCHR Guide navigates with some difficulty the unsettled questions of whether human rights indicators should be universally available or state-generated and context specific. In fact, it suggests that both are true. However, this conclusion generates confusion when it comes to applying the OHCHR principles and standards to developing new indicators, as we attempt to do in this chapter. Should indicators focus on compliance measurements along dimensions that apply to all State Parties? Or should they reflect the different level of progressive realization of the right? Science is a field particularly fraught with imbalances because differences among countries’ abilities to produce scientific knowledge, partly due to variation in availability of resources that can be allocated to research and development, are staggering. We will come back to this challenge later in the chapter.

15.5 Designing Indicators of the Right to Science

According to the case study analysis conducted by Davis, Kingsbury, and Merry, indicators are developed following a three-step trajectory: conceptualization, production, and use.²² Conceptualization requires outlining a theory underpinning the indicator followed by developing categories for measurement and modes of analyzing the data.²³ At this stage, important choices are made that will define what is measured and how. Actors, institutions, expertise, temporality, and resources all influence these choices.²⁴ Production entails collecting data and promulgating indicators. According to Davis, Kingsbury and Merry, promulgation is comprised of presenting, packaging, and disseminating indicators.²⁵ Through promulgation, indicators accomplish one of their essential tasks: to represent the performance of what is measured. To perform this task, raw data must be organized and then operationalized to provide representations of the implications of that organization.²⁶ Operationalization is the process of connecting concepts to observations of a phenomenon, which includes a case’s value on a variable.²⁷ Finally, use occurs when indicators are accessed, consumed, and deployed by the nonproducers of indicators.

Fortunately, the OHCHR Guide facilitates the design of human rights indicators as it addresses the three stages of development of indicators (conceptualization, production, and use). Our proposal of indicators of the right to science builds upon the conceptual framework and illustrative indicators presented in the Guide.

15.5.1 Conceptualization

The OHCHR Guide conceptualizes human rights indicators as compliance monitoring tools. They are therefore designed to measure the adherence by State Parties to a legal standard. For measurement to be possible, the particular human right’s legal standard must be translated into a limited number (up to four or five) of tangible characteristics called “attributes,” which must be at the same time comprehensive (“based on an exhaustive reading of the standard”)²⁸ and selective (“[t]o the extent feasible, the attributes of the human right should collectively reflect the essence of its normative content.”)²⁹ Compliance is then assessed through indicators that measure the State Party’s commitment, effort, and achievements in relation to each attribute. Based on Hunt’s work on the human right to health,³⁰ the OHCHR Guide identifies three types of indicators: structural, process, and outcome. Structural indicators “help in capturing the acceptance, intent and commitment of the State to undertake measures in keeping with its human rights obligations.”³¹ Process indicators “help in assessing a State’s efforts, through its implementation of policy measures and programmes of action, to transform its human rights commitments into the desired results.”³² Outcome indicators “help in assessing the results of State efforts in furthering the enjoyment of human rights.”³³

15.5.2 Production

Production involves data collection and promulgation. Data collection entails identifying sources for human rights indicators and, if needed, setting up data-generating mechanisms. The OHCHR identifies sources and methods to collect data, which include qualitative and quantitative information describing “acts of human rights violations and identif[ing]victims and perpetrators,” socioeconomic and administrative statistics, perception and opinion surveys, and expert judgments. This list is typical of other governance indicators. Limitations on data availability and access to resources to collect new data may restrict the choice of indicators. As the OHCHR points out, this dilemma has implications for the choice of indicators because “[t]he use of indicators as a human rights assessment tool depends critically on the availability of relevant and reliable data.”³⁴

The OHCHR Guide lays out prescriptions that producers of indicators must follow in identifying sources of data or setting data-generating mechanisms. First, data collection must be reliable, transparent, and independent. Data sources and generating-mechanisms must be chosen to produce reliable indicators.³⁵ Indicators are reliable if the same mechanisms used over time produce consistent values, all things remaining equal. Second, transparent methods that a third party can verify lead to acceptable indicators that can be employed to study human rights. Third, when conducting data collection, individuals and organizations producing indicators should be independent of the subjects being monitored.

The OHCHR also prescribes that indicators be “global and universally meaningful but also amenable to contextualization and disaggregation by prohibited grounds of discrimination … and by vulnerable or marginalized population group at country level.”³⁶ Disaggregation is defined in terms of “sex, age, region (e.g., urban/rural) or administrative unit, economic wealth (e.g., quintile or decile of income or expenditure), socioeconomic status (e.g., employment status) or educational attainment.”³⁷ Disaggregation permits analyses of discrimination according to categories that typically are socially unacceptable.

Indicators must also be “human rights standards-centric; anchored in the normative framework of rights.” To ensure this requirement is met, three principles must be followed. First, when an indicator’s unit is the individual, and the individual is the source of the indicator’s data, that individual “should have the option of self-identifying when confronted with a question seeking sensitive personal information related to them” (the principle of self-identification). These include identification with a particular racial or ethnic group. Second, “all data-collection activities must respect robust guarantees to prevent abuse of sensitive data” and be regulated by law (the principle of data protection). Third, when feasible, data must be disaggregated at the desired level (the principle of disaggregation).

Finally, indicators must be developed employing a transparent and verifiable methodology, be timely, and be time-bound.³⁸ The “structural, process, and outcome indicators” framework helps achieve this objective.³⁹ In fact, structural indicators tend to be stable because legal reform and policy change occur relatively infrequently. Outcomes do not change momentarily but capture trends that develop over time. Conversely, process indicators are “more sensitive to changes … therefore more effective in capturing the progressive realization of the right or in reflecting the efforts of the state parties in protecting the rights.” To this list of prescriptions, we add validity and importance. Simply put, validity is actually measuring what we intend to measure.⁴⁰ An indicator may be reliable, but not valid. For instance, an indicator may measure a phenomenon repeatedly over time, but that measure may be incorrect, or invalid. Importance concerns whether the indicator is valuable and important for studying and assessing human rights.⁴¹ The properties of being valuable and important are related to being meaningful, centered around human rights, and transparent, but merit distinct attention because of their utility to establishing human rights indicators.

Regarding promulgation, that is the presentation, packaging, and dissemination of indicators, the OHCHR Guide instructs readers to organize and visualize indicators in the form of a matrix in which the attributes that capture the normative standard of a right are placed on the horizontal axis and the indicators on the vertical axis. A matrix approach offers a bird’s-eye view of the normative content of the right being monitored. “[T]he tabular format shows the range of indicators that are relevant to capturing the normative content and the corresponding obligations of human rights standards.” It offers a reader a clear overview of the normative content of a right just by looking at the one-page template laying out the indictors and the attributes of the right. Additionally, a matrix approach also offers readers the opportunity to focus solely on certain sections of the matrix. Focus may thus be restricted to indicators of a single attribute (a single column) or one a single indicator cutting across multiple attributes (a single row). This strategy may be useful to civil society organizations interesting in monitoring only certain indicators or certain attributes. This approach, the OHCHR argues, leads to “the selection of a few indicators, at any given point in time, to monitor the implementation of human rights is more informed and likely to be more meaningful than would otherwise be the case.”⁴²

15.5.3 Use

According to the OHCHR Guide, compliance monitoring is the most critical use of indicators. This use is at the core of the monitoring mechanism set up by the ICESCR, which focuses on State Parties’ compliance with their treaty obligations and progress towards securing the universal realization of human rights. Indicators facilitate monitoring by offering a “structured and transparent approach to applying standardized information … to national human rights assessments.”⁴³ This is not the only use that the OHCHR Guide envisions though. In fact, four additional uses are possible: performance monitoring; human rights advocacy and people empowerment; national human rights plans and development plans; and human rights budgeting.⁴⁴

Performance monitoring measures the extent to which development interventions achieve the intended results, relative to what was planned.⁴⁵ Indicators can be used in human rights advocacy to make “human rights more concrete and tangible in the eyes of policymakers,” to contextualize efforts to realized human rights thus “encouraging national ownership of the advocacy strategy,” and to capture the range of issues involved in the realization of specific rights.⁴⁶ Indicators can also be used in the design and implementation of national human rights plans and development plans. Introduced at the World Conference on Human Rights, national action plans are instruments in which a state identifies the steps necessary to improve the promotion and protection of human rights.⁴⁷ Commitment-effort-results indicators can be used to frame these plans and guide their implementation. Finally, indicators can be used by states to draft budgets that are aligned with their human rights obligations and prioritize spending resources likely to result in improved development and governance.⁴⁸

While adequate indicators can be used for any of these purposes, it is important to note that the intended use has an impact on the design of indicators. To reiterate, what indicators measure can become goals that guide nation states in their efforts to implement human rights. One significant concern is that if no indicator of a given component of a human right exists, a national government may fail to implement that particular component. This is particularly relevant to the work we present in the chapter as we are proposing newly designed indicators. If the goal is to monitor compliance, which is the case of the indicators we propose here, indicators must be anchored to human rights standards. If the goal is to measure the effectiveness of development programs or national human rights plans, indicators are better anchored to the objectives of those programs, which are to support the measurement of inputs, outputs, outcomes, and impact.⁴⁹

15.6 Building the Right to Science Indicators

Before getting to the proposed indicators, it is important to state certain key assumptions of our proposal.

First, we had to define the intended use of the indicators because different uses call for different designs of the indicators concerned. We chose to propose indicators to be used primarily for compliance monitoring rather than performance monitoring. The implication for indicator design is that we follow the “structural, process, outcome” model of indicators rather than the “input, output, outcomes, impact” model.⁵⁰ Our choice is in line with how the CESCR and the OHCHR have engaged with human rights indicators for more than two decades. We envision the proposed indicators being referenced by the CESCR when instructing states as to what they must address in their periodical reports, by States parties when reporting their progress, and by civil society organizations when drafting parallel reports. We focus on compliance monitoring because we believe this is an important function in achieving progress towards the realization of the right to science.

Envisioning indicators for compliance monitoring does not exclude their use, directly or indirectly, to achieve other objectives discussed in the OHCHR Guide. In addition to referencing them in parallel reports, human rights advocates can use indicators directly to advocate for the realization of the right at the state level and in shaping the science policy discourse.⁵¹ Monitoring indicators can also be used directly in human rights budgeting as they identify areas (process indicators) that measure allocation of research funding. Monitoring indicators can also be used indirectly in performance evaluation to identify the inputs, outputs, outcomes, and impacts to be measured when a national human rights plan or a development program is assessed.

Second, we sought to clarify the human right standard expressed in Article 15 of the ICESCR because indicators must be grounded in, and drawn from, this standard. The challenge for us was that, as the essays in this volume amply demonstrate, the normative content of the right is underdeveloped compared to other rights – even other cultural rights.⁵² Consequently, identifying attributes under these conditions was inherently difficult as the human rights standards that underpin the right are unsettled.⁵³ Keeping in mind that this is, for the most part, uncharted territory, we have identified attributes and indicators based on various sources. The most important is General comment No. 25 on Science and economic, social and cultural rights.⁵⁴ Adopted in 2020, the General Comment, General Comment lays out the general, specific, and core obligations of State parties and articulate duties connected with international cooperation and national implementation.⁵⁵ Another important source is subsequent state practice in the application of the ICESCR. This practice is evidence of an agreement between the parties under Article 31(3)(b) of the 1969 Vienna Convention on the Law of Treaties and therefore are a source of interpretation of treaties.⁵⁶ State practice emerges from the reports filed by State Parties as part of the monitoring process of human rights treaties, which on occasion mention the right to science.⁵⁷ The most comprehensive source of analysis of state practice was recently completed by Yotova and Knoppers, who construct it upon reviewing all reports filed by State Parties to the ICESCR pursuant to Articles 16 and 17 of the ICESCR. A word of caution is needed in approaching state practice as a source of attributes and indicators. Since state practice emerges from periodical reports, what State Parties are asked to report is crucial. Reports are typically structured according to UN reporting guidelines, including the ones the CESCR employs.⁵⁸ If State Parties are expected to present information on the human right to science to the CESCR, but the reporting guidelines do not request information on a certain aspect of the right, State Parties are likely not to focus on, even think about, the aspect of the right that are not mentioned in said guidelines. The same may be true for civil society organizations who monitor UN monitoring efforts and State Parties’ implementation efforts. What we are suggesting is that, if UN reporting guidelines do not instruct State Parties to present information about a particular aspect of the human right to science, that aspect may come to be viewed as unimportant to the right. Finally, we considered soft law instruments, such as the Venice Statement, which is the outcome of the gathering of experts in 2009 under the auspices by UNESCO,⁵⁹ the reports of Farida Shaheed in her capacity as Independent Expert and then Special Rapporteur on cultural rights,⁶⁰ and various UNESCO Declarations addressing the relationship between science and human rights.⁶¹

Third, we considered whether to include only indicators for which data are readily available. Data availability, of course, shapes which indicators are established, and which are not. The advantage of limiting the proposal to indicators based on existing data is that the CESCR and State Parties could promptly deploy such indicators in compliance monitoring. However, when data are not readily available about a particular aspect of a right, indicators will probably not be developed. Because this problem may lead to failure to measure, absence of a measure may come to be understood as indicating that aspect of the right is not important as lacking socio-legal value. Including indicators for which data are not readily available has the advantage of broadening progress monitoring to aspects of the right that are currently not captured empirically. Based on this reasoning, we decided to include indicators for which data are currently not available, knowing that the CESCR can request State Parties to gather and publicly share this information.⁶²

15.7 A Matrix of Right to Science Indicators

Based on these key elements of human rights indicators, we have generated a matrix that applies the OHCHR framework and follows the model of the indicative indicators published in the OHCHR Guide (see Appendix A). This matrix includes attributes on the horizontal axis and structural, process, and outcome indicators on the vertical axis.

Attributes are translations of legal standards into measurable dimensions. This means that each attribute is dependent upon, albeit may not coincide with, the legal obligations that the ICESCR creates. Our reading of Article 15 of the ICESCR led us to identify three main attributes and two secondary attributes. The three main attributes are scientific freedom, access to benefits, and opportunities to participate. The secondary attributes are the duty to create an enabling environment and to facilitate international cooperation. These secondary attributes complement the three main attributes rather than creating independent obligations. For instance, an enabling environment for science “implies inter alia academic and scientific freedom”⁶³ and international cooperation facilitates both the exercise of scientific freedom and access to benefits. These attributes must not be construed as exhaustive of the normative content of Article 15. Although the OHCHR Guide cautions readers to identify no more than four or five attributes, more attributes can be added. In fact, access to benefits could be conceptually split into two attributes: access to scientific knowledge and access to the applications of scientific knowledge. Furthermore, access to scientific knowledge can be expanded to measure the extent to which State parties protect and foster open science practices. In our minds, the indicators we propose are meant to trigger a conversation rather than close the door to further elaboration. This point is crucial given renewed attention to the right to science, as well as evolution in science, technology and human rights.

Indicators “unpack specific aspects of implementing the standard associated with that right.”⁶⁴ Structural indicators capture the acceptance, intent and commitment of the State to undertake measures in keeping with its human rights obligations. In relation to the right to science, structural indicators include signing and ratifying the ICESCR and its Optional Protocol. Additionally, it captures the creation of the basic institutional mechanisms deemed necessary for the promotion and protection of the right’s attributes. This includes adopting express legislative provisions to incorporate the obligations arising out of Article 15 of the ICESCR in domestic laws. Data for this indicator are partially available as they can be extracted from state reports⁶⁵ or derived from researching the laws of State Parties.⁶⁶

Structural indicators of different kinds correspond to the three main attributes. Scientific freedom indicators include legislation that ensures scientists’ abilities to pursue any kind of research, to engage in self-governance (through scientific societies, respecting self-regulatory instruments, and other means), to be free of censorship and other threats to their independence, to engage in collaborations, to travel domestically and internationally, and to access funding. Structural indicators should also capture whether laws and regulations meet the requirements of “legality,” that is, to convey in clear terms what is lawful and what is not. Access to benefits indicators include legislation that ensures adequate access to scientific knowledge, translational pathways to transforming knowledge into tangible benefits (pharmaceutical drugs, innovations in the agricultural, industrial, and other sectors), and policy development mechanisms that promote the use of scientific knowledge in decision making. Opportunities to participate indicators include laws and regulations addressing discrimination in recruitment of participants in research, ensuring equality by gender and minority status⁶⁷ in access to scientific education and professions, promoting citizen science, and including indigenous populations and minorities in the formulation of science policy.

Process indicators capture implementation efforts to transform human rights commitments into the desired results. Evidence of these efforts include resource allocation, developing and deploying plans and programs, setting up institutional mechanisms and incentives that redress violations, stimulate compliance, and promote the realization of the right. Scientific freedom indicators include the number (total number and number of publicly funded) and quality of universities, research institutions, and scientific societies, percentage of GDP allocated to research and development, and number of professionals employed as researchers (in total and by government). Access to benefits indicators include data on enrollment in tertiary education, on access to and use of university library or the internet, quality of math and science education, and internet use in schools for learning purposes. Opportunities to participate indicators include disaggregated data (by gender and minority status) on professional and educational opportunities in the sciences, participation in research and in the formulation of science policy, citizen science, the ability to attract talent from abroad, and scientists’ participation in international conferences.

Outcome indicators measure the results of the commitments and efforts in furthering the enjoyment of human rights. Scientific freedom indicators include reported cases of persecution of, sanctions of, or political pressure on scientists (in the absence of evidence of misconduct), number and quality of articles published in scientific journals, and availability of scientists and engineers. Access to benefits indicators include aggregated data on scientific literacy, educational attainment and membership in professional and scientific societies, scientific literacy, attainment or completion of a doctoral degree or equivalent, suppression of or prohibition to divulge scientific data and/or knowledge (this could also be a scientific freedom indicator), and on innovation (collaboration between business and academia, development of drugs and other translational products). Finally, opportunities to participate indicators include disaggregated data (by gender and minority status) on scientific literacy, educational attainment, and membership in the profession and scientific societies.

15.8 Conclusions

The human right to science may be a game changer. It has the potential to reduce discrimination when it comes to learning about and doing science. This right could strengthen scientists’ freedoms to collaborate, publish, and conduct their research. It could also make possible international collaborations, which may lead to scientific advances with universal benefits.

Yet we need to know more about the impacts of the human right to science as societies move toward its realization. As this volume demonstrates, the terrain of the human right to science is vast. This chapter responds to calls for indicators of this right. Such indicators have manifold uses. Indicators will enable scholars to properly articulate the normative content of the human right to science. Indicators can be employed to assess compliance with international frameworks of human rights, which can be used to determine how nation states are performing in comparison with each other. UN bodies, nation states, and civil society actors, including watch dogs, can employ indicators to monitor implementation of the human right to science. This chapter, however, encourages experts, researchers, and leaders to maintain wariness of indicators. Although indicators are certainly useful, we must recognize their limitations, including what they do not measure. As scholarship moves forward, indicators will play key roles in understanding how science can benefit everyone.

16 Epilogue Tensions in the Right to Science Then and Now

Christine Mitchell

Until now, a universal human right to science has not received the attention it should have. In the past, other rights may have seemed more fundamental, more urgent, easier to claim, and, perhaps, more straightforward to ensure. Yet a right to science is increasingly critical. Life, and planet earth itself, is threatened by climate change, global pandemics, exhaustion of mineral resources, mass extinction of species, human overpopulation, inequitable resource distribution, non-sustainable agriculture, and the possibilities of nuclear warfare, hostile artificial intelligence, and cosmic threats. Scientists of every sort are needed from astrophysicists to epidemiologists and sociologists to zoologists. Equally important: the understanding and participation of a wider, diverse public is essential if science is to effectively address these problems in line with shared social values.

A right to science has been included in modern visions of human rights, beginning at least from the compilation of rights in the American Declaration on the Rights and Duties of Man in 1945¹ and continuing most notably through the Universal Declaration of Human Rights (UDHR) and the International Covenant on Economic, Social, and Cultural Rights (ICESCR)² accepted across the globe and ratified by 171 nation states.³

Then, when rights were being enumerated in the 1940s, science made possible the saving of millions of lives with penicillin, as well as the mass killing of humans and all living beings with atomic bombs. These put “Science” in the United Nations Educational Scientific and Cultural Organization (UNESCO(⁴ and undoubtedly helped to keep a right to science among the declared human rights as many marveled at the miracles of science while also worrying about “what the scientists will do to us next.”⁵

Now, seventy-five years later, we live in a frightful time of deaths from a global pandemic, widespread public protests about shocking social inequities, and international migration to escape political aggression in so many countries. Attention must focus on a universal right to science if we are to preserve human dignity, enable human flourishing, and address world problems. This chapter will consider what counts as science and examine two of the tensions (by no means all) built into the right to science as articulated in the UDHR and ICESCR.

What constitutes science itself has been described by Christensen⁶ and authors herein, but must be noted, at least in summary, in order to see the tensions inherent in the way a right to science is understood. For, science may be, at times, (1) universally objective while also being culturally relative, and (2) practiced primarily by scientists, yet also open to the public in a variety of ways.

Science is different from the arts in that the source of its knowledge typically exists with or without human observation or intervention. Music, paintings, and novels require artists. The evolution of species, the birth and death of stars, and DNA replication happen whether or not scientists study these phenomena. As ten-year-olds are taught, “the scientific method” is applied to an already existing world. There is therefore a tendency to think of scientists as researching rather than creating. Although many scientists study existing phenomena, nevertheless, most also create. They routinely create conditions for research and new knowledge, as with e-brains,⁷ or create applications of scientific knowledge, as with rocket science, or create new phenomena, such as altered genomes, or algorithms for machine learning.

In earlier times, science was understood as a quest for truths about the knowable world, often cited in western histories as starting with Aristotle⁸ and including both theoretical and practical investigations aimed at discovering universal laws that apply at all times everywhere. The word “scientist” did not come into being until the nineteenth century,⁹ however, when William Whewell patronizingly chided Mary Somerville (1780–1872)¹⁰ about her writing On the Connexion of the Physical Sciences which had become a bestselling popular science book¹¹ in 1846. Whewell argued that the sciences were inevitably disintegrating into specialties such as astronomy, geology, physics and the like, and he offered as evidence the absence of a general name for those who study the material world in all its facets. He proposed the deliberately absurd neologism “scientists,” which began to catch on after his death as industrialists and educators sought to separate science from literature, humanities, and the arts. In the year of Somerville’s death, The Popular Science Monthly was founded by Edward Youmans “to disseminate scientific knowledge to the educated layman.”¹² As Henry Cowles recounts in his new book on the history of the scientific method,¹³ Youmans and the authors who wrote for his magazine, championed the actual study of things using a methodology they reified – the scientific method – and this way of thinking permeated American culture in the twentieth century. Thus, scientists observe, hypothesize, predict, experiment, analyze, conclude, and report their findings about the natural world.

Science is no longer so simple, nor singular. Taking an expansive view, the Committee on Economic, Social and Cultural Rights describes “the sciences” as “a complex of knowledge, fact and hypothesis, in which the theoretical element is capable of being validated in the short or long term, and to that extent includes the sciences concerned with social facts and phenomena.” As such, science encompasses both natural and social sciences, and refers both to a process following a rigorous methodology (“doing science”) and to results of that process in the form of scientific knowledge and its applications.¹⁴ Thus, scientific “knowledge should be considered as science only if it is based on critical inquiry and is open to falsifiability and testability. Knowledge which is based solely on tradition, revelation or authority, without the possible contrast with reason and experience, or which is immune to any falsifiability or intersubjective verification, cannot be considered science.”¹⁵

What, then, is this thing that scientists do? According to UNESCO, in 2017,

the word “science” signifies the enterprise whereby humankind, acting individually or in small or large groups, makes an organized attempt, by means of the objective study of observed phenomena and its validation through sharing of findings and data and through peer review, to discover and master the chain of causalities, relations or interactions; brings together in a coordinated form subsystems of knowledge by means of systematic reflection and conceptualization; and thereby furnishes itself with the opportunity of using, to its own advantage, understanding of the processes and phenomena occurring in nature and society.¹⁶

These descriptions of science hint at the tension between science as the acquisition and application of a specific sort of universal human knowledge, and science as a human enterprise that has its own practices, beliefs, and, we might add, its own customs, culture, and specialty tribes.

Cultural Science

Contrasting a historical understanding of science “then” with a more contemporary view of science “now,” illuminates the tension created by a basic view of science that is not only universal, but true, objective, factual, perhaps seen by some as infallible, and, hence, the best way of settling arguments about the way the world is. Indeed, some scientific findings about fluid dynamics, magnetism, the structure of atoms, genes, and other phenomena may be absolute and universal across cultures, time, and place. Nevertheless, it is also the case that other things once thought to be scientifically established are not absolute. Rather, they are refined (as with Linnaeus’ hierarchical taxonomy of living things), revised (as when Mendelian inheritance patterns were supplemented by genomic and proteomic science), revoked (as in the transition from Ptolemaic to Copernican cosmology), or rejected based on subsequent science, as when the theory of spontaneous generation of life from inorganic matter was replaced by an understanding of biogenesis.

Even empirically “proven” scientific findings, as well as theoretical science, are subject to incomplete, limited, culturally influenced perspectives and paradigm shifts.¹⁷ There is more than ample evidence now, that scientific knowledge is incremental and often more relative than absolute. Mistakes even in laws of science believed to be universal can arise from incomplete knowledge, as in the transition from the Newtonian law of gravity to Einstein’s theory of general relativity. What may be claimed as scientifically established can also be wrong in other ways, through error,¹⁸ misconduct (as Roberto Andorno¹⁹ describes in this book), and fraud,²⁰ but also, relative to its time and surrounding culture.

Culture, as used here, is a word for the way of life of a group of people, that is, the way they see the world and themselves in it – their values, beliefs, behaviors, and symbols, deeply assumed and accepted with little thought or question, and passed on by communication and imitation to members (acculturation) and new generations (enculturation).²¹ Science can be “cultural” in two ways. First, science is part of culture – it is influenced by the culture in which it is situated, and it influences that culture as it did in the diffusion of “the scientific method” described earlier. In many modern societies, science plays a major role in shaping cultural beliefs, thinking patterns, and assumptions about the way the world is, as well as views of the people and other phenomena in it. Sometimes this occurs by gradual, unorchestrated diffusion of ideas from science into the culture. At other times, however, there is a conscious effort, by scientists and others, to use the authority of science to claim that scientific theories and evidence support a particular belief system or political goals. Secondly, science itself and the sciences have their own culture of beliefs about who may be a scientist, practices for doing science, and rituals marking scientific discoveries and achievements.

Although there are many examples of how science is cultural, perhaps one of the most unfavorable illustrations of its cultural boundedness is structural racism in academic sciences and the persistence of racist science. First, concerning structural racism, we note that the practice of science in many countries – especially who gets to do science – is, unfortunately, a mostly white endeavor.²² Contemporary protests by scientists and their supporters²³ are bringing belated attention to longstanding systemic racism in science, and the ways institutional culture in the academy²⁴ and science itself privileges whiteness and Anglo-euro-centric worldviews and ways of knowing. Although Blacks comprise 12 percent of the US population, for example, they received just 1.8 percent of all Ph.D.s in science and engineering in the USA in 1987, and the number is declining.²⁵ In the USA, for example, in 2018, the latest date for which data are available, Black residents were 12.3 percent of the U.S. population, but only 8.4 percent of bachelor's graduates, 8.3 percent of master's graduates and 5.5 percent of doctoral graduates.²⁶ As thirteen scientists, (not one of whom is Black) on the editorial board of Cell put it in 2020, “science has a racism problem.”²⁷

Still considering the cultural situatedness of science and widening the lens, it must be noted that three-quarters of the world’s scientific publications came from Western Europe and North America. And more than 90 percent of the Nobel laureates in the natural sciences are from Western countries, despite the fact that these countries are home to only 10 percent of the world’s population.²⁸

The second and related example concerns racist science. Even as human rights were being discussed in many parts of the world and drafted into written documents in the twentieth century, the science of eugenics was flourishing in Nazi Germany, the USA, and elsewhere,²⁹ aimed at improving the quality of white “races” by denigrating and removing people deemed inferior. With the help of racial science experts, physicians, psychiatrists, anthropologists, and newly medically trained geneticists, Nazi Germany developed racial health policies that involved mass sterilization of “genetically diseased” persons resulting in approximately 400,000 forced sterilizations, over 275,000 euthanasia deaths, and the near annihilation of European Jewry.³⁰

Drafters of the UDHR will have been acutely aware of medical science gone wrong through the Nuremberg Doctors Trials³¹ in 1946–1947 which resulted in sixteen being found guilty and seven sentenced to death and executed on June 2, 1948. Nevertheless, Julian Huxley (1887–1975), the evolutionary biologist and Life Fellow of the (British) Eugenics Society, became the first Director-General of UNESCO and described his amended vision of “world evolutionary humanism,”^{32 33} even as the human rights revolution brought about the UN and International Court of Justice in 1945, UNESCO in 1946, the World Health Organization in April 1948, and the Universal Declaration of Human Rights in December 1948. Still today, the search continues by some scientists for measurable biological differences between “races,” despite decades of studies yielding no supporting evidence, as science absorbs and reflects back the racism in societies in which it is situated.³⁴

As science is part of culture, the right to take part in cultural life includes the right of everyone to take part in scientific life. Readers familiar with the field of human rights and those who have read the foregoing chapters will not be surprised, since the right to science is nested within cultural rights in both the UDHR and ICESCR. As Mylene Bidault³⁵ explained, the right to science, contained in the right to take part in cultural life (as these together comprise article 15 of the ICESCR), is primarily a right of access to participate in science. The right to science contains correlative duties to ensure the conservation, development, and diffusion of science, to respect the freedom indispensable for scientific research, and to encourage and develop international contacts and cooperation.

It is easy to acknowledge that excellence in science requires diversity and equity, but there is far to go in achieving a diversity of perspectives in the various sciences, not only those of persons of color, but also women and LGBTQ persons, those with disabilities,³⁶ and other members of the public. It is necessary, therefore, to examine the tension between science as done by professional, educated, expert, science specialists, and science in which the public may effectively participate. For while science provides knowledge about the way the world “is,” society is necessary for deliberating together about the way things “ought” to be.

Open Science

A universal right to science is not merely about respecting the freedom necessary for science and protecting the interests of scientists – though it is that. It is also the right of everyone to participate in that aspect of cultural life that is named science.

Passively, as first expressed in the UDHR, the right to science is a right “to share in scientific advancement and its benefits” (Article 27 (1)), and, as expressed in the ICESCR, “the right of everyone to enjoy the benefits of scientific progress and its applications” (Article 15 (1) (b)). In a time when science ranges from experiments conducted in a hadron collider to constructing artificially intelligent robots and modifying the genome of embryos, one might automatically assume on first reading that only scientists have the education and expertise to contribute to scientific knowledge. Hence, a universal right to science might be expected to relegate the rest of humanity to patiently receiving the benefits of science, as indeed some delegates argued during the drafting and discussion prior to approval of the UDHR by the General Assembly of the UN. At most, public participation would thus be primarily as consumers of science.

As Mikel Mancisidor³⁷ took care to explain, however, it is a misapprehension of the right to science to limit its scope to sharing in the benefits of science, such as the benefit of affordable medicine. Rather, as Mancisidor’s historical hermeneutic shows, the word “share” entails action, agency, and active participation. He therefore proposes that “to share in” be considered synonymous with “to participate in” or “take part in.” The right to science, he shows, “goes beyond ‘benefit from’ and advocates broader concepts of ‘participation in’; a right which includes participation in scientific creation (citizen science, or “ordinary people doing science”³⁸), the dissemination of scientific knowledge, and participation in scientific policy, among other things.”³⁹

A right to science that entails more robust public participation in science aligns with the original goals of the human rights drafters then, in the 1940s, and now, in the 2020s, as people in both eras aspire to enable human flourishing and peace throughout the world. Much has since been done to develop strategies for public engagement in science⁴⁰ and document the value of citizen science⁴¹, though much remains to be done. Two examples may suffice.

When Sharon Terry’s two children were diagnosed in 1994 with a rare progressive genetic disease (pseudoxanthoma elasticum PXE), she learned that neither their doctors nor scientists knew much about it. Terry⁴² was a former college chaplain who had become a full-time mother, and her husband was a construction manager who had majored in drafting. Together they persuaded Harvard to let them use lab space at night and, with the informal help of generous postdoctoral students, they learned about genes and eventually built a diagnostic test and posted data on an open online consortium, called Genetic Alliance, which Sharon Terry now runs. Genetic Alliance⁴³ offers tools to help other families, gives advice on how to do scientific research and how to become a political activist, and runs a participant owned and managed registry and biobank.⁴⁴

The Terrys had to overcome numerous barriers to contribute as they did to science. The majority of science research is publicly funded through tax monies allocated through grants, by governmental agencies like the (US) National Institutes of Health and the European Commission, almost exclusively to science investigators selected by review committees of fellow scientists. Most science is done in academic and government settings or for-profit companies. Scientists who share their findings in scholarly articles, monographs, and books for the academic market are generally not paid to publish, and their data, findings, and publications are usually not freely available to the general public. Instead, scientists submit their work to journals and publishing corporations, such as Elsevier,⁴⁵ who handle scientific peer review and publication, and the information is privatized and put behind a paywall.⁴⁶ Libraries then pay an institutional fee for faculty to have access, or individuals may pay a fee per article. Sometimes authors pay publishing companies a fee as well, usually in the thousands of dollars, for their work to be freely available – typically labelled “open access”– in which case the for-profit publishing company collects fees from both the universities and authors.⁴⁷

Given such boundaries around academic science in western countries, a second, less heartening example of opening access to science involves the young internet pioneer, Aaron Swartz,⁴⁸ whose best-known contribution is the one that also led to his death. In his teens, Schwartz was a wunderkind involved in developing RSS (which organizes web feeds), Markdown (a simple editing language for webpages), Reddit (now a massive news aggregation site), and Creative Commons (a nonprofit copyright-sharing system). In 2008, Swartz raised concerns about the tyranny of academic publishing in an online document entitled “Guerilla Open Access Manifesto.”⁴⁹ He wrote, “The world’s entire scientific and cultural heritage, published over centuries in books and journals, is increasingly being digitized and locked up by a handful of private corporations.” He called for sharing information openly and freely with the whole world, not just scientists, elite universities, and citizens of the First World.

As a research fellow at Harvard, Swartz had free online library privileges. In late 2010 he hooked up his computer to the internet in an unlocked, unmarked closet at MIT, and wrote a program to download articles from behind the paywall operated by the journal storage company, JSTOR, to make them freely available around the world. He was arrested and charged with breaking and entering. Although JSTOR declined to press charges, US Federal prosecutors aggressively pursued the case, charging him with eleven violations of the computer fraud and abuse act, carrying a cumulative maximum penalty of $1 million in fines, thirty-five years in prison, asset forfeiture, restitution, and supervised release. He declined to plead guilty and plea-bargain. In 2013, Aaron Swartz hanged himself in his apartment.

The interests of scientists as authors, of science publishing companies, science communities, and the wider public, are obviously in tension even though they are contained together in the right to science articulated in Article 15 of the ICESCR. The current imbalance that prioritizes protection of the material interests of scientists could be addressed in part by applying the right to science in a manner that aligns with the order of priorities as they are listed in ICESCR. Article 15 not only recognizes the right of everyone “(c) to benefit from the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author,” but first declares the right of everyone “(a) to take part in cultural life “and “(b) to enjoy the benefits of scientific progress and its applications … ” As Aaron Swartz, we, and other human rights scholars realize, redressing and restricting the “unprecedented expansion of intellectual property regimes”⁵⁰ and profits from science applications and publishing will be necessary for science to be open and public participation in science to flourish.

One encouraging follow-up to the tragedy of Aaron Swartz’s death is the formation of SciHub⁵¹ “the first pirate website in the world to provide free public access to tens of millions of research papers,”⁵² Library Genesis, Open Science, and internet sites⁵³ that make science and other articles and books available to those who have access to computers and the internet. Access to science publications, however, is just the foundation for open science. Robust and diverse participation in open science includes not only the most widespread forms of engagement by educating the public about science, but also forms of participation that enable communities and individuals to actively participate in science and do science themselves.

The following are examples of public participation in the development and diffusion of science internationally, across cultures:

1. (1) Widespread science education both in public schools for children and adolescents, and other forums for adults to examine the latest science and its implications;

2. (2) Participating in human research as an informed, consenting, volunteer in studies;

3. (3) Donating data (e.g. Open Humans)⁵⁴ or being a subject in large public research projects (institutionally reviewed and approved) for which individual consent may be waived;

4. (4) Serving as a member of committees, commissions and the like with scientists and funders that shape selection of problems to be studied;

5. (5) Being a community member of an Institutional Review Board or other research ethics review committee or data safety monitoring board;

6. (6) Individual (or small group) consultant, collaborator, or public partner on specific science research regarding which the public member has special interest or historical commitment;

7. (7) Embedding in science labs and research projects increasingly done by bioethicists, moral philosophers, humanities scholars, journalists, and others to provide an “outsider” perspective, identify ethical concerns prior to problems, and keep the general public abreast of scientific discoveries and their implications;

8. (8) Being a “citizen scientist” as in collecting ecological data on birds and butterflies,⁵⁵ or mapping brain slices,⁵⁶ or conducting one’s own science project in a do-it-yourself lab such as DIY Science.⁵⁷

Although these may not constitute full realization of a universal human right to enjoy, access, and participate in science, they would constitute significant progress toward opening science to everyone. Further, the right to science explicitly includes the duty of “conservation, development and diffusion of science” (ICESCR 15 (2)) as well as “encouragement and development of international contacts and co-operation in the scientific and cultural fields” (ICESCR 15 (4)). This book, we hope, has contributed to meeting that part of the right to science.