Hostname: page-component-745bb68f8f-b6zl4 Total loading time: 0 Render date: 2025-01-11T22:43:42.922Z Has data issue: false hasContentIssue false
  • English
  • Français

Data Sharing in the Context of Health-Related Citizen Science

Published online by Cambridge University Press:  01 January 2021

Mary A. Majumder  and
Amy L. McGuire
Get access Rights & Permissions [Opens in a new window]

Abstract

As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists. We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and we applaud recent efforts to facilitate data sharing. At the same time, we believe it is problematic to treat data sharing and publication as ethical requirements for citizen scientists, especially where there is the potential for burden and harm without compensating benefit.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 48 , Issue S1: Unregulated Health Research Using Mobile Devices , Spring 2020 , pp. 167 - 177
Copyright
Copyright © American Society of Law, Medicine and Ethics 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Guerrini, C.J. et al., “Citizen Science, Public Policy,” Science 361, no. 6398 (2018): 134-136; “Rise of the Citizen Scientist,” Nature 524, no. 7565 (2015): 265-266; Pauwels, E. and Denton, S.W., The Rise of the Bio-Citizen, Kuiken, T., ed. (2018), available at <https://www.wilsoncenter.org/sites/default/files/media/documents/article/rise_of_biocitizenfinal.pdf> (last visited March 17, 2020).CrossRefGoogle Scholar
Guerrini et al., supra note 1, at 134.Google Scholar
See, e.g., Aungst, H., Fishman, J.R. and McGowan, M.L., “Participatory Genomics Research: Ethical Issues from the Bottom Up to the Top Down,” Annual Review of Genomics and Human Genetics 18 (2017): 357-367.CrossRefGoogle Scholar
Pauwels and Denton, supra note 1; Kullenberg, C. and Kasperowski, D., “What Is Citizen Science? A Scientometric Meta-Analysis,” PLoS ONE 11, no. 1 (2016): e0147152.CrossRefGoogle Scholar
Evans, B.J., “Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science,” American Journal of Law & Medicine 42, no. 4 (2016): 651-685.CrossRefGoogle Scholar
Bietz, M., Patrick, K., and Bloss, C., “Data Donation as a Model for Citizen Science Health Research,” Citizen Science: Theory and Practice 4, no. 1 (2019): 1-11.Google Scholar
Id.Google Scholar
Pauwels and Denton, supra note 1; Lee, J.M., Hirschfield, E., and Wedding, J., “A Patient-Designed Do-It-Yourself Mobile Technology System for Diabetes: Promise and Challenges for a New Era in Medicine,” Journal of the American Medical Association 315, no. 14 (2016): 1447-1448.CrossRefGoogle Scholar
Bietz, Patrick, and Bloss, supra note 6.Google Scholar
Wang, Y. et al., “CitSci.org: A New Model for Managing, Documenting, and Sharing Citizen Science Data,” PLoS Biology 13, no. 10 (2015): e1002280; Lynn, S.J. et al., “Designing a Platform for Ethical Citizen Science: A Case Study of CitSci.org,” Citizen Science: Theory and Practice 4, no. 1 (2019): 1-15; CitSci, “About,” available at <www.CitSci.org> (last visited September 30, 2019); Open Humans, available at <www.openhumans.org> (last visited September 30, 2019);Patients Like Me, available at <https://www.patientslikeme.com/about> (last visited September 30, 2019).Google Scholar
Barrett, M.A. et al., “Big Data and Disease Prevention: From Quantified Self to Quantified Community,” Big Data 1, no. 3 (2013): 168-175 (noting the potential role of technology in facilitating both data collection and precision prevention interventions, and the critical role of technologies that capture geography in facilitating the integration of environmental data with other kinds of data); Chrisinger, B.W. and King, A.C., “Stress Experiences in Neighborhood and Social Environments (SENSE): A Pilot Study to Integrate the Quantified Self with Citizen Science to Improve the Built Environment and Health,” International Journal of Health Geographics 17, no. 1 (2018): 17 (study involved a smartphone/tablet-based application collecting photos and audio narratives about elements of the built environment and a wrist-worn sensor collecting time-stamped data including 3-axis accelerometry, skin temperature, blood volume pressure, heart rate, and electrodermal activity; part of the “Our Voice” family of studies, available at <http://med.stanford.edu/ourvoice.html> (last visited September 30, 2019); English, P.B., Richardson, M.J., and Garzón-Galvis, C., “From Crowdsourcing to Extreme Citizen Science: Participatory Research for Environmental Health,” Annual Review of Public Health 39 (2018): 335-350 (providing examples of social justice-oriented citizen science projects).CrossRefGoogle Scholar
UNESCO Global Open Access Portal, Open Science Movement, available at <http://www.unesco.org/new/en/communication-and-information/portals-and-platforms/goap/open-science-movement> (last visited September 30, 2019).+(last+visited+September+30,+2019).>Google Scholar
Phillips, M. and Knoppers, B.M., “Whose Commons? Data Protection as a Legal Limit of Open Science,” Journal of Law, Medicine and Ethics 47, no. 1 (2019): 106-111.CrossRefGoogle Scholar
Cook-Deegan, and McGuire, A.L., “Moving Beyond Bermuda: Sharing Data to Build a Medical Information Commons,” Genome Research 27, no. 6 (2017): 897-901.CrossRefGoogle Scholar
Summary of Principles Agreed at the First International Strategy Meeting on Human Genome Sequencing, U.S. Department of Energy Genome Program, available at <http://www.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml> (last visited February 28, 2020) (reproducing the original report by the Human Genome Organisation (HUGO)).+(last+visited+February+28,+2020)+(reproducing+the+original+report+by+the+Human+Genome+Organisation+(HUGO)).>Google Scholar
David, P.A., “The Economic Logic of “Open Science” and the Balance Between Private Property Rights and the Public Domain in Scientific Data and Information: A Primer,” in Uhlir, P. and Esanu, J., eds., The Role of Scientific and Technical Data and Information in the Public Domain: Proceedings of a Symposium (Washington, D.C.: National Academies Press, 2003), NIH Data Sharing Policy, available at <https://grants.nih.gov/grants/policy/data_sharing/> (last visited February 28, 2020).Google Scholar
Wellcome Open Access Policy 2021, available at <https://wellcome.ac.uk/news/wellcome-updates-open-access-policy-align-coalition-s> (last visited February 28, 2020) (policy will take effect January 1, 2021).+(last+visited+February+28,+2020)+(policy+will+take+effect+January+1,+2021).>Google Scholar
Taichman, D.B. et al., “Sharing Clinical Trial Data — A Proposal from the International Committee of Medical Journal Editors,” New England Journal of Medicine 374, no. 4 (2016): 384-386.CrossRefGoogle Scholar
Gold, E.R. et al., “An Open Toolkit for Tracing Open Science Partnership Implementation and Impact,” Gates Open Research 3 (2019): 1442.CrossRefGoogle Scholar
Drazen, J.M., “Data Sharing and the Journal,” New England Journal of Medicine 374, (2016): e24, available at <https://www.nejm.org/doi/full/10.1056/NEJMe1601087> (last visited February 28, 2020).CrossRefGoogle Scholar
See Hoffman, S. and Podgorski, A., “Big, Bad Data: Law, Public Health, and Biomedical Databases,” Journal of Law, Medicine & Ethics 41, no. 1, Suppl. (2013): 56-60; Merson, L., Gaye, O., and Geurin, P.J., “Avoiding Data Dumpsters—Toward Equitable and Useful Data Sharing,” New England Journal of Medicine 374, no. 25 (2016): 2424-2415.CrossRefGoogle Scholar
Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories, Returning Individual Research Results to Participants: Guidance for a New Research Paradigm (Washington, DC: National Academies Press, 2018).Google Scholar
European Citizen Science Association, Ten Principles of Citizen Science, September 2015, available at <https://ecsa.citizen-science.net/sites/default/files/ecsa_ten_principles_of_citizen_science.pdf> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
European Citizen Science Association, Citizen Science & Open Science: Synergies & Future Areas of Work, DITOs Citizen Science Policy Brief #3, February 2018, available at <https://ecsa.citizen-science.net/sites/default/files/ditos-policybrief3-20180208-citizen_science_and_open_science_synergies_and_future_areas_of_work.pdf> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
European Citizen Science Association, ‘Do It Yourself Biotechnology’ (DIYBio) for open, inclusive, responsible Biotechnology, DITOs Citizen Science Policy Brief #2 (May 2017), available at https://ecsa.citizen-science.net/sites/default/files/ditos-policy-brief2-20171004-diybio.pdf> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Citizen Science Association, “Values,” available at <https://www.citizenscience.org/association/about/values> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Draft DIYbio Code of Ethics from North American Congress, July 2011, available at <https://diybio.org/codes/code-of-ethics-north-america-congress-2011> (last visited February 28, 2020), and Draft DIYbio Code of Ethics from European Congress, 2011, available at <https://diybio.org/codes/draft-diybio-code-of-ethics-from-european-congress> (last visited February 28, 2020).+(last+visited+February+28,+2020),+and+Draft+DIYbio+Code+of+Ethics+from+European+Congress,+2011,+available+at++(last+visited+February+28,+2020).>Google Scholar
Bowser, A. et al., “Accounting for Privacy in Citizen Science: Ethical Research in a Context of Openness,” CSCW 2017, 2124-2138 available at <https://dl.acm.org/citation.cfm?id=2998305> (last visited February 28, 2020).Google Scholar
Citizen, Lexico, available at <https://www.lexico.com/en/definition/citizen> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
See Barrett et al., supra note 11.Google Scholar
Merton, R.K., “The Normative Structure of Science,” in Merton, R.K., The Sociology of Science (Chicago: University of Chicago Press, 1973): 267-278, at 274.Google Scholar
Terry, S., “Challenging the Drug Development Status Quo,” available at <https://blog.tedmed.com/challenging-drug-development-status-quo> (last visited September 30, 2019); Precision Medicine World Conference, “Questions for Sharon Terry, Genetic Alliance-PMWC 2019 Honoree,” available at <https://www.pmwcintl.com/sharon-terry-2019sv-qa/> (last visited February 28, 2020).+(last+visited+September+30,+2019);+Precision+Medicine+World+Conference,+“Questions+for+Sharon+Terry,+Genetic+Alliance-PMWC+2019+Honoree,”+available+at++(last+visited+February+28,+2020).>Google Scholar
Might, M. and Wilsey, M., “The Shifting Model in Clinical Diagnostics: How Next-Generation Sequencing and Families Are Altering the Way Rare Diseases are Discovered, Studied, and Treated,” Genetics in Medicine 16, no. 10 (2014): 736-737, 737.CrossRefGoogle Scholar
Crowdsourcing and Citizen Science Act, H. R. 6414, 15 U.S.C. § 3724(d)(6).Google Scholar
Bowser et al., supra note 28; Lynn et al., supra note 10; English, Richardson, and Garzón-Galvis, supra note 11.Google Scholar
European Citizen Science Association, Ten Principles, supra note 23.Google Scholar
Hoffman, S., “Citizen Science: The Law and Ethics of Public Access to Medical Big Data,” Berkeley Technology Law Journal 30, no. 3 (2015): 1741-1805.Google Scholar
Kumar, S. et al., “Center of Excellence for Mobile Sensor Data-to-Knowledge (MD2K).” Journal of the American Medical Informatics Association 22 (2015): 1137-1142; Bietz, Patrick, and Bloss, supra note 6, point out that even data that seem non-sensitive, like step counts, can support inferences about behavior that may be sensitive, such as whether an employee was out and about while taking a sick day. They also point out increases in re-identification and other risks associated with data aggregation and the capacity to combine datasets.CrossRefGoogle Scholar
See Hickvale, K., Torous, J., and Larsen, M.E., “Assessment of the Data Sharing and Privacy Practices of Smartphone Apps for Depression and Smoking Cessation,” JAMA Network Open 2, no. 4 (2019): e192542; Moore, S. et al., “Consent Processes for Mobile App Mediated Research: Systematic Review,” JMIR MHealth and UHealth 5, no. 8 (2017): e126, available at <http://mhealth.jmir.org/2017/8/e126> (last visited February 28, 2020). For an overview of concerns related to mobile technologies, see Rothstein, M.A. et al., “Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations,” Journal of Law, Medicine and Ethics 48, no. 1, Suppl. 1 (2020): 196-226.CrossRefGoogle Scholar
Bowser et al., supra note 28.Google Scholar
Protecting Personal Health Data Act, 116th Congress, S. 1842; for the results of a non-governmental initiative to develop high-level standards for digital health entities, see “Guiding Principles on Ethics in Digital Health,” Stanford Libraries, February 21, 2019, available at <https://library.stanford.edu/node/156021> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Bietz, Patrick, and Bloss, supra note 6.Google Scholar
For ethical guidance tailored to projects involving the use of automated, wearable cameras in observational healthy behavior research, see Nebeker, C. et al., “Engaging Research Participants to Inform the Ethical Conduct of Mobile Imaging, Pervasive Sensing, and Location Tracking Research,” TBM 6 (2016): 577-586; Regarding risks to groups such as residents of particular neighborhoods in the case of research focused on environmental hazards, see English, Richardson, and Garzón-Galvis, supra note 11, at 346-347 (“Although citizen science may presume the best interests of the community partners, partaking in traditional epidemiologic studies of hazard identification without explicit consideration of social justice may contribute to inequitable hazards in poor, disempowered, and nonwhite communities.”)Google Scholar
Hoffman and Podgorski, supra note 21; Merson, Gaye, and Geurin, supra note 21.Google Scholar
Bonney, R. et al., “Next Steps for Citizen Science,” Science 343, no. 6178 (2014): 1436-1427; The ECSA Principles, supra note 23, are straightforward on this front, with Principle 6 stating: “Citizen science is considered a research approach like any other, with limitations and biases that should be considered and controlled for.” An extended reflection on quality concerns related to citizen science focuses on fitness for use: Thus, the philosophical literature on the aims of science, the empirical literature on data quality in citizen science, and the citizen science community’s own reflections on how to define data quality all converge on the conclusion that it is unfruitful to pose concerns about the quality of data and methodology as a universal critique of citizen science… [In] specific contexts, we can ask whether the data provided by particular citizen science groups and the methods that they have employed are sufficient for addressing the epistemic or practical task at hand. We can also explore whether there are ways of altering the questions being asked or improving the data being collected so they are compatible. In some cases, citizen science projects may even challenge professional scientists to reconsider their assumptions about what kinds of data or methods are most helpful and what kinds of questions ought to be investigated. Elliott, K.C. and Rosenberg, J., “Philosophical Foundations for Citizen Science,” Citizen Science: Theory and Practice 4, no. 1 (2019): 1-9, at 4.CrossRefGoogle Scholar
Bonney et al., supra note 45; Carlson, T. and Cohen, A., “Linking Community-Based Monitoring to Water Policy: Perceptions of Citizen Scientists,” Journal of Environmental Management 219 (2018): 168-177; English, Richardson, and Garzón-Galvis, supra note 11.CrossRefGoogle Scholar
Stanford Guiding Principles, supra note 41.Google Scholar
Guerrini et al., supra note 1. See also Hoffman, supra note 28, at 1803-1804 (describing several nontraditional approaches to facilitation of scientific peer review).Google Scholar
Bietz, Patrick and Bloss, supra note 6 (evidence of demographic differences between Apple iPhone and Android mobile phone users). For more on unrepresentativeness bias as concern in citizen science, see Hoffman, supra note 28, at 1783; Del Savio, L., Prainsack, B., and Buyx, A., “Motivations of Participants in the Citizen Science of Microbiomics: Data from the British Gut Project,” Genetics in Medicine 19, no. 8 (2017): 959-961 (participants in British Gut Project, which requires payment to join, older and more educated than general population); Maddox, T.M., Rumsfeld, J.S., and Payne, P.R.O., “Questions for Artificial Intelligence in Health Care,” Journal of the American Medical Association 321, no. 1 (2019): 31-32 (“quantified self” efforts known to “oversample the healthy, wealthy, and well”); Nebeker, C. et al., “Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists,” JMIR MHealth and UHealth 5, no. 6 (2017): e87 (concerns around privacy and potential risks related to data found across Latino, Somali, and Native Hawaiian Pacific Islander community members); English, Richardson, and Garzón-Galvis, supra note 11 (history has given rise to mistrust of research in low-income communities and communities of color, necessitating awareness of how citizen science approaches can potentially harm those communities and steps to empower communities and mitigate risks).CrossRefGoogle Scholar
Hoffman, supra note 28, at 1784-5; Wenner, D.M., Kimmelman, J., and London, A.J., “Patient-Funded Trials: Opportunity or Liability?” Cell Stem Cell 17, no. 1 (2015): 135-137. Note that the Citizen Science Association has a Data and Meta-data Working Group that, among other things, maintains a webpage that includes a data management guide and other resources on data quality.CrossRefGoogle Scholar
Gold et al., supra note 19. It is clear that absent long-term investment and planning data may simply disappear, as happened with Data Donors, a data donation project sponsored by the Wikilife Foundation. Bietz, Patrick, and Bloss, supra note 6. A lack of sustained support may also explain the signs of stasis on the website for DIY genomics. Pages for patient-organized genomic research studies listed as active have not been updated in the past 5 years. Further, Genomera, the company that provided the infrastructure utilized in these studies, has gone out of business.Google Scholar
Pauwels and Denton, supra note 1, at 39.Google Scholar
Lee, Hirschfield, and Wedding, supra note 8.Google Scholar
Healthline, “The #WeAreNotWaiting Diabetes DIY Movement,” available at <https://www.healthline.com/health/diabetesmine/innovation/we-are-not-waiting#1> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Leibrand, S., “How and Why We Are Working with the FDA: Background and a Brief Summary of the Recent Meeting with the FDA about the Nightscout Project,” available at <https://diyps.org/2014/10/12/how-and-why-we-are-working-with-the-fda-background-and-a-brief-summary-of-the-recent-meeting-with-the-fda-about-the-nightscout-project/> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Lee, Hirschfield, and Wedding, supra note 8.Google Scholar
U.S. Food and Drug Administration, FDA Warns against the Use of Unauthorized Devices for Diabetes Management (May 17, 2019), available at <https://www.fda.gov/news-events/press-announcements/fda-warns-against-use-unauthorized-devices-diabetes-management> (last visited February 28, 2020); Snouffer, E., “DIY Artificial Pancreas Gets Warning from FDA,” available at <https://diabetesvoice.org/en/news/diy-artificial-pancreas-gets-warning-from-fda/> (last visited February 28, 2020). Despite the FDA warning, and the risks inherent in an approach that exploits a security flaw in an older generation of technologies, many individuals with diabetes continue to champion DIY approaches for reasons that include enhanced flexibility and cost-savings. See de Marco, H., “DIY Tech Gives People More Freedom in Managing Diabetes,” Kaiser Health News, August 19, 2020; Brown, D., “Hacking Diabetes: People Break Into Insulin Pumps as an Alternative to Delayed Innovations,” USA Today, June 5, 2019.+(last+visited+February+28,+2020);+Snouffer,+E.,+“DIY+Artificial+Pancreas+Gets+Warning+from+FDA,”+available+at++(last+visited+February+28,+2020).+Despite+the+FDA+warning,+and+the+risks+inherent+in+an+approach+that+exploits+a+security+flaw+in+an+older+generation+of+technologies,+many+individuals+with+diabetes+continue+to+champion+DIY+approaches+for+reasons+that+include+enhanced+flexibility+and+cost-savings.+See+de+Marco,+H.,+“DIY+Tech+Gives+People+More+Freedom+in+Managing+Diabetes,”+Kaiser+Health+News,+August+19,+2020;+Brown,+D.,+“Hacking+Diabetes:+People+Break+Into+Insulin+Pumps+as+an+Alternative+to+Delayed+Innovations,”+USA+Today,+June+5,+2019.>Google Scholar
Lynn et al., supra note 10, at 4.Google Scholar
Id., at 6.Google Scholar
Wang et al., supra note 10.Google Scholar
Open Humans, “Explore and Share Your Data,” available at <https://www.openhumans.org/explore-share> (last visited March 16, 2020).+(last+visited+March+16,+2020).>Google Scholar
Open Humans, “Project Guidelines, available at <https://www.openhumans.org/community-guidelines/#project> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Open Humans, Data Use Policy, available at <https://www.openhumans.org/data-use/> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Open Humans, “Public Data Guidelines,” available at <https://www.openhumans.org/community-guidelines/#public-data> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Lewis, D., “Making It Possible for Researchers to Work with #OpenAPS or General Nightscout Data — and Creating a Complex Json to Csv Command Line Tool That Works with Unknown Schema,” available at <https://diyps.org/2017/02/12/making-it-possible-for-researchers-to-work-with-openaps-or-general-nightscout-data-and-creating-a-complex-json-to-csv-command-line-tool-that-works-with-unknown-schema/> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Nightscout, “#WeAreNotWaiting,” available at <http://www.nightscout.info/> (last visited February 28, 2020).+(last+visited+February+28,+2020).>Google Scholar
Gert, B., Morality: Its Nature and Justification (New York: Oxford University Press, 2005).CrossRefGoogle Scholar
Draft DIYbio Code of Ethics from European Congress, supra note 27.Google Scholar
Follett, R. and Strezov, V., “An Analysis of Citizen Science Based Research: Usage and Publication Patterns,” PLoS ONE 10, no. 11 (2015): e0143687.CrossRefGoogle Scholar
Bonney et al., supra note 45.Google Scholar
Grant, A.D., Wolf, G.I., and Nebeker, C., “Approaches to Governance of Participant-led Research: A Qualitative Case Study,” BMJ Open 9 (2019): e025633, at 9; see also Cooper, C. et al., “Project Categories to Guide Institutional Oversight of Responsible Conduct of Scientists Leading Citizen Science in the United States,” Citizen Science: Theory and Practice 4, no. 1 (2019): 7 (noting concerns that IRBs may not appropriately accommodate community-based participatory research and may restrict report-backs that lessen knowledge disparities in professional-citizen scientist collaborations generally).CrossRefGoogle Scholar
Ahrens, S., “Opening (and Swallowing) A Can of Worms to Treat My Crohn’s Disease,” American Journal of Gastroenterology 111, no. 7 (2016): 918-920. (The Editor’s Note in its entirety: “This article discusses the experience, ingenuity, and determination of Sean Ahrens, a young patient with Crohn’s disease who took it upon himself to treat his longstanding, symptomatic Crohn’s disease with pig whipworm eggs. Reading this story will make some of you uncomfortable. You might question whether this work belongs in a medical journal or sends the wrong message to readers. However, we recognize that this topic is controversial and that N=1 reports cannot and should not change practice. The purpose of this story is not to encourage the use of pig whipworm or to demonstrate its efficacy (or lack thereof). We firmly believe that patients are uniquely qualified to provide insights into how they view their illnesses, weigh risks and benefits, and ultimately achieve self-efficacy. Stories like this are important for us to acknowledge and understand, even if they do not change our practice.”)CrossRefGoogle Scholar
Sarna-Wojcicki, D. et al., “Where Are the Missing Coauthors? Authorship Practices in Participatory Research,” Rural Sociology 82, no. 4 (2017): 713-746,CrossRefGoogle Scholar
Tucket, A.G. et al. (including Burnie Brae Citizen Scientists), “Older Adults Using Our Voice Citizen Science to Create Change in Their Neighborhood Environment,” International Journal of Environmental Research and Public Health 15, no. 12 (2018): 2685. The ECSA principles, supra note 23, simply state in Principle 8 that “[c]itizen scientists are acknowledged in project results and publications.”CrossRefGoogle Scholar
Chrisinger and King, supra note 11.Google Scholar
Castleden, H., Morgan, V.S., and Neimanis, A., “Researchers’ Perspectives on Collective/Community Co-Authorship in Community-Based Participatory Indigenous Research,” Journal of Empirical Research on Human Research Ethics 5, no. 4 (2010): 23-32; For a taxonomy of modes of recognition for patient partners in research, see Smith, E., Bélisle-Pipon, J.S., and Resnik, D., “Patients as Research Partners; How to Value Their Perceptions, Contribution, and Labor?” Citizen Science: Theory and Practice 4, no. 15 (2019): 1-13.CrossRefGoogle Scholar