Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

The National Institute of Mental Health (Bethesda, MD) reports that approximately 5.2 million Americans experience post-traumatic stress disorder (PTSD) each year. PTSD can be severely debilitating and diminish quality of life for patients and those who care for them. Studies have indicated that propranolol, a beta-blocker, reduces consolidation of emotional memory. When administered immediately after a psychic trauma, it is efficacious as a prophylactic for PTSD. Use of such memory-altering drugs raises important ethical concerns, including some futuristic dystopias put forth (...) by the President's Council on Bioethics. We think that adequate informed consent should facilitate ethical research using propranolol and, if it proves efficacious, routine treatment. Clinical evidence from studies should certainly continue to evaluate realistic concerns about possible ill effects of diminishing memory. If memory-attenuating drugs prove effective, we believe that the most immediate social concern is the over-medicalization of bad memories, and its subsequent exploitation by the pharmaceutical industry. (shrink)

Professional sport in the United States has widely adopted biometric technologies, dramatically expanding the monitoring of players’ biodata. These technologies have the potential to prevent injuries, improve performance, and extend athletes’ careers; they also risk compromising players’ privacy and autonomy, the confidentiality of their data, and their careers. The use of these technologies in professional sport and the consumer sector remains largely unregulated and unexamined. We seek to provide guidance for their adoption by examining five areas of concern: validity and (...) interpretation of data; increased surveillance and threats to privacy; risks to confidentiality and concerns regarding data security; conflicts of interest; and coercion. Our analysis uses professional sport as a case study; however, these concerns extend to other domains where their use is expanding, including the consumer sector, collegiate and high school sport, the military, and commercial sectors where monitori... (shrink)

This special issue of Science, Technology, & Human Values assembles papers that consider relations among science, ethics, and justice. The papers are drawn from a 2011 National Science Foundation-sponsored workshop that brought together interdisciplinary scholars to consider, incorporate, and attend to the meanings, uses, and social consequences of ethical questions and justice ideals in technoscientific projects. The papers included in this special issue examine key areas that emerged from this workshop, including public participation, the production of knowledge, what counts as (...) consent, ownership of biomaterials, and others. Together, the papers raise questions about new directions and articulations of power, justice, and inequalities in science and technology studies. (shrink)

New pharmacological therapies, often dubbed `lifestyle drugs', demonstrate the enactment of yet another interface between technologies and bodies that promises a re-fashioning of the body with transformative, life-enhancing results. This article analyzes the emergence of one lifestyle drug, Viagra, from a technoscience studies perspective, conceptualizing Viagra as a new medical technology of the body. Through an analysis of promotional materials for Viagra, we argue that this pharmaceutical device performs ideological work through its discursive scripts that serves to reinforce and augment (...) dominant cultural narratives in relation to material bodies, particularly those of hegemonic masculinity and male (and female) sexuality. We conclude that Viagra carries the potential to reify and reinforce these dominant and hegemonic narratives, while at the same time, through ensuring an open market for heterogeneous users, it provides spaces for alternatives to these normative ideals and assumptions. (shrink)

The National Institute of Mental Health reports that approximately 5.2 million Americans experience post-traumatic stress disorder each year. PTSD can be severely debilitating and diminish quality of life for patients and those who care for them. Studies have indicated that propranolol, a beta-blocker, reduces consolidation of emotional memory. When administered immediately after a psychic trauma, it is efficacious as a prophylactic for PTSD. Use of such memory-altering drugs raises important ethical concerns, including some futuristic dystopias put forth by the President's (...) Council on Bioethics. We think that adequate informed consent should facilitate ethical research using propranolol and, if it proves efficacious, routine treatment. Clinical evidence from studies should certainly continue to evaluate realistic concerns about possible ill effects of diminishing memory. If memory-attenuating drugs prove effective, we believe that the most immediate social concern is the over-medicalization of bad memories, and its subsequent exploitation by the pharmaceutical industry. (shrink)

In a 2003 Science article, Eric Juengst and colleagues asserted, “NIH [National Institutes of Health] has a responsibility to help society respond to the implications of antiaging research for whic...