Because of the important benefits that biomedical research offers to humans, some have argued that people have a general moral obligation to participate in research. Although the defense of such a putative moral duty has raised controversy, few scholars, on either side of the debate, have attended to the social context in which research takes place and where such an obligation will be discharged. By reflecting on the social context in which a presumed duty to participate in research will obtain, (...) this article shows that decontextualized discussions of this putative moral obligation are problematic. (shrink)

Current controversy over whether the Office of Management and Budget system of racial and ethnic classification should be used in pharmacogenetics research as suggested by the U.S. Federal Drug Administration has been couched in terms of realist-social constructionist debates on race. The assumptions both parties to these debates share instead need to be relinquished—specifically, dichotomies between the social and scientific and what is descriptive and evaluative/normative. This paper defends a pragmatic approach to the question of the appropriateness of the OMB (...) group categories in pharmacogenetics research, an approach that is local and context-specific rather than global, incorporates practical and ethical as well as theoretical dimensions, and recognizes intersections of the social and the biological in the constitution of group categories. (shrink)

In 2000, researchers from the Human Genome Project proclaimed that the initial sequencing of the human genome definitively proved, among other things, that there was no genetic basis for race. The genetic fact that most humans were 99.9% the same at the level of their DNA was widely heralded and circulated in the English-speaking press, especially in the United States. This pronouncement seemed proof that long-term antiracist efforts to de-biologize race were legitimized by scientific findings. Yet, despite the seemingly widespread (...) acceptance of the social construction of race, post-HGP genetic science has seen a substantial shift toward the use of race variables in genetic research and, according to a number of prominent scholars, is re-invoking the specter of earlier forms of racial science in some rather discomfiting ways. During the past seven years, the main thrust of human genetic research, especially in the realm of biomedicine, has shifted from a concern with the 99.9% of the shared genome — what is thought to make humans alike — towards an explicit focus on the 0.1% that constitutes human genetic variation. Here I briefly explore some of the potential implications of the conceptualization and practice of early 21st century genetic variation research, especially as it relates to questions of race. (shrink)

Contemporary research ethics policies started with reflection on the atrocities perpetrated upoconcentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim of (...) this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research. (shrink)

Before any citizen enters the role of scientist, medical practitioner, lawyer, epidemiologist, and so on, each and all grow up in a society in which the categories of human differentiation are folk categories that organize perceptions, relations, and behavior. That was true during slavery, during Reconstruction, the eugenics period, the two World Wars, and is no less true today. While every period understandably claims to transcend those categories, medicine, law, and science are profoundly and demonstrably influenced by the embedded folk (...) notions of race and ethnicity. (shrink)

In his paper “Scientific research is a moral duty”, John Harris argues that individuals have a moral duty to participate in biomedical research by volunteering as research subjects. He supports his claim with reference to what he calls the principle of beneficence as embodied in the “rule of rescue” , and the principle of fairness embodied in the prohibition on “free riding” . His view that biomedical research is an important social good is agreed upon, but it is argued that (...) Harris succeeds only in showing that such participation and support is a moral good, among many other moral goods, while failing to show that there is a moral duty to participate in biomedical research in particular. The flaws in Harris’s arguments are detailed here, and it is shown that the principles of beneficence and fairness yield only a weaker discretionary or imperfect obligation to help others in need and to reciprocate for sacrifices that others have made for the public good. This obligation is discretionary in the sense that the individuals are free to choose when, where, and how to help others in need and reciprocate for earlier sacrifices. That Harris has not succeeded in claiming a special status for biomedical research among all other social goods is shown here. (shrink)

Patricia Smith considers what a consistently liberal view of affirmative obligation would have to be in order to accommodate liberal commitments to freedom and justice and also account for longstanding issues that are central to liberal democratic society. Patricia Smith argues that taking these institutions seriously requires the rejection of atomistic individualism and, instead, the acceptance of a moderate view of social obligation.

Like many trained in philosophy, we greatly value the work of those scholars with the courage to espouse contrarian views, particularly when the ideas in dispute lie at the very heart of entrenched...

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...) business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)