JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact support@jstor.org.. American Sociological Association is collaborating with JSTOR to digitize, preserve and extend access to American Sociological Review. The first social transformation of American medicine institutionally established medicine by the end of World War II. In the next decades, medicalization-the expansion of medical jurisdiction, authority, and practices into new realms-became widespread. Since about 1985, dramatic changes in both the organization and practices of contemporary biomedicine, implemented largely through the integration of technoscientific innovations, have been coalescing into what the authors call biomedicalization, a second "transformation" of American medicine. Biomedicalization describes the increasingly complex, multisited, multidirectional processes of medicalization, both extended and reconstituted through the new social forms of highly technoscientific biomedicine. The historical shift from medicalization to biomedicalization is one from control over biomedical phenomena to transformations of them. Five key interactive processes both engender biomedicalization and are produced through it: (1) the political economic reconstitution of the vast sector of biomedicine; (2) the focus on health itself and the elaboration of risk and surveillance biomedicines; (3) the increasingly technological and scientific nature of biomedicine; (4) transformations in how biomedical knowledges are produced, distributed, and consumed, and in medical information management; and (5) transformations of bodies to include new properties and the production of new individual and collective technoscientific identities. HE GROWTH OF medicalization-defined as the processes through which aspects of life previously outside the jurisdiction of medicine come to be construed as medical problems-is one of the most potent social transformations of the last half of the Direct correspondence to Adele E. Clarke, Department . We argue that major, largely technoscientific changes in biomedi-cine1 are now coalescing into what we call Sara Shostak, and especially Leigh Star, Herbert Gottweis, Vincanne Adams, and the ASR Editors and anonymous reviewers. This paper is part of an ongoing collaboration initiated by Clarke; coauthors are listed in random order. 1 Following Latour (1987), we use the term "technoscience" to indicate an explicit move past scholarly traditions that separated science and technology conceptually and analytically. We argue that these two domains should be regarded as co-constitutive; we thus challenge the notion AMERICAN SOCIOLOGICAL REVIEW, 2003, VOL. 68 (APRIL: 161-194) 161 162 AMERICAN SOCIOLOGICAL REVIEW biomedicalization2 and are transforming the twenty-first century. Biomedicaliza...
Since 2007, consumer genomics companies have marketed personal genome scanning services to assess users’ genetic predispositions to a variety of complex diseases and traits. This study investigates early users’ reasons for utilizing personal genome services, their evaluation of the technology, how they interpret the results, and how they incorporate the results into health-related decision-making. The analysis contextualizes early users’ relationships to the technology, the knowledge generated by it, and how it mediates their relationship to their own health and to biomedicine more broadly. The results reveal that early users approach personal genome scanning with both optimism for genomic research and scepticism about the technology’s current capabilities, which runs contrary to concerns that consumers may be ill equipped to interpret and understand genome scan results. These findings provide important qualitative insight into early users’ conceptualizations of personal genomic risk assessment and illuminate their involvement in configuring this technology in the making.
BackgroundThe 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.DiscussionWe 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.SummaryWe 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.
The BRAIN Initiative aims to break new ground in the scale and speed of data collection in neuroscience, requiring tools to handle data in the magnitude of yottabytes (1024). The scale, investment and organization of it are being compared to the Human Genome Project (HGP), which has exemplified “big science” for biology. In line with the trend towards Big Data in genomic research, the promise of the BRAIN Initiative, as well as the European Human Brain Project, rests on the possibility to amass vast quantities of data to model the complex interactions between the brain and behavior and inform the diagnosis and prevention of neurological disorders and psychiatric disease. Advocates of this “data driven” paradigm in neuroscience argue that harnessing the large quantities of data generated across laboratories worldwide has numerous methodological, ethical and economic advantages, but it requires the neuroscience community to adopt a culture of data sharing and open access to benefit from them. In this article, we examine the rationale for data sharing among advocates and briefly exemplify these in terms of new “open neuroscience” projects. Then, drawing on the frequently invoked model of data sharing in genomics, we go on to demonstrate the complexities of data sharing, shedding light on the sociological and ethical challenges within the realms of institutions, researchers and participants, namely dilemmas around public/private interests in data, (lack of) motivation to share in the academic community, and potential loss of participant anonymity. Our paper serves to highlight some foreseeable tensions around data sharing relevant to the emergent “open neuroscience” movement.
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.
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.
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.
The future clinical applications of whole genome sequencing come with speculation and enthusiasm but require careful consideration of the true system costs and health benefits of the clinical uses of this exciting technology.
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