A decade has passed since the mapping of the human genome—an event that paved the way for many new developments in biomedicine and related fields. In ethics, this milestone was accompanied by calls for changes in ruling ethical frameworks.

The practice of obtaining informed consent has its history in, and gains its meaning from, medicine and biomedical research. Discussions of disclosure and justified nondisclosure have played a significant role throughout the history of medical ethics, but the term “informed consent” emerged only in the 1950s. Serious discussion of the meaning and ethics of informed consent began in medicine, research, law, and philosophy only around 1972.

In biomedical ethics the principle of autonomy is closely connected with the moral and legal claim to informed consent. After World War II and the dramatic misuse of medicine in Nazi Germany, informed consent regulations were expected to help avoid similar misuse in the future, to help overcome the traditional medical paternalism, and to advance the liberty rights of patients and human subjects of research. With the rise of the new field of bioethics in the 1970s, the traditional beneficence-based model of medical ethics shifted in the direction of an individual autonomy model.

Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled “liberal” or “communitarian,” referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, but it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest.

This quotation from the London Review of Books is an example of a turn—a different way of looking at things that involves a redefinition of the kind of thing higher education is and how it should be provided. It is a turn away from a public good perspective—the opposite, it might be said, of the kind of turn addressed in this article.

The expression “common good” usually conjures up benevolent associations: it is something to be desired, a worthy goal, and it would be a brave person who declared he or she was against the common good. Yet modern times have taught us to be critical and even suspicious of such grand rhetoric, leading us to query what lies behind this ambitious notion, who formulates what it stands for, and how such formulations have been reached.

It is often argued that a major tension in bioethics is between protecting the private interests of individuals on one hand and contributing to the common good on the other. In this article I ask how fitting this description is as regards the interest at stake in relation to the issue of consent to participation in population data collections. I raise some doubts about what I take to be two common positions regarding public and private interests in this context. The first is that restricted individual consent protects private interests at the cost of public interest.

The ongoing legal and bioethics debates on consent requirements for collecting, storing, and utilizing human biological material for purposes of basic and applied research—that is, genomic research biobanking—have already managed to pass through three ostensibly dissimilar stages

We have arrived at a situation in which policymakers and ethicists are considering abandoning informed consent in the governance of certain new technologies, many of which are related to large-scale information systems. A paradigm case is the problem with using individuals’ informed consent to regulate biobanks. As sometimes suggested, there is a need for “new ethical frameworks.”

The goal of this article is to explore how a social justice framework can help illuminate the role that consent should play in health and science policy. In the first section, we set the stage for our inquiry with the important case of Henrietta Lacks. Without her knowledge or consent, or that of her family, Mrs. Lacks’s cells gave rise to an enormous advance in biomedical science—the first immortal human cell line, or HeLa cells.

With the development of large-scale health registries and human biobanks to be used as research infrastructures, bioethicists, lawyers, philosophers, and social scientists have worked intensely to cast light on current challenges to the principle of informed consent.

Readers are invited to contact Greg S. Loeben in writing at Midwestern University, Glendale Campus, Bioethics Program, 19555 N. 59th Ave., Glendale, AZ 85308 ([email protected]) regarding books they would like to see reviewed or books they are interested in reviewing.

This section is meant to be a mutual effort. If you find an article you think should be abstracted in this section, do not be bashful—submit it for consideration to feature editors Kenneth V. Iserson and Barry Morenz at [email protected].