Jennifer R. Fishman

Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine

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.

Propranolol and the Prevention of Post-Traumatic Stress Disorder: Is it Wrong to Erase the “Sting” of Bad Memories?

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 Presidents 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.

Manufacturing Desire: The Commodification of Female Sexual Dysfunction

The process of bringing new drugs to market interweaves commercialism, science, clinical medicine, and governmental regulation. Through their authority and public persona as medical experts, academic clinical trial researchers studying these pharmaceuticals are integral to this process, serving as mediators between producers (the pharmaceutical companies) and consumers (clinicians and patients) of new drugs through a complex set of exchange networks. Using examples from my ethnographic research on the search for pharmaceuticals to treat what has become known as female sexual dysfunction, this paper explores the links academic researchers make with drug manufacturers and consumer markets. Academic researchers have become an integral aspect of drug development, not only by conducting clinical trial research, but also by participating in a number of other activities that assist pharmaceutical companies in identifying and creating new markets. In this paper, I examine how researchers attend professional meetings where they present clinical trial data, lecture at continuing medical education conferences, and offer themselves as ‘experts’ to raise awareness about disorders and their treatments. Modifying a sociology of technology approach, this paper focuses on the actors in the social network who mediate the junctions between technological producers and consumers. This extends work in this area through theorizing the linkages between exchange networks, commodification techniques, and technoscientific developments.

Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate

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.

Big data, open science and the brain: lessons learned from genomics

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.

Serving epigenetics before its time

Society prizes the rapid translation of basic biological science into ways to prevent human illness. However, the premature rush to take murine epigenetic findings in these directions makes impossible demands on prospective parents and triggers serious social and ethical questions.

Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives

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.

Why Justice? Introduction to the Special Issue on Entanglements of Science, Ethics, and Justice

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.

Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing

Background Many commentators on “direct-to-consumer” genetic risk information have raised concerns that giving results to individuals with insufficient knowledge and training in genomics may harm consumers, the health care system, and society. In response, several commercial laboratories offering genomic risk profiling have shifted to more traditional “direct-to-provider” (DTP) marketing strategies, repositioning clinicians as the intended recipients of advertising of laboratory services and as gatekeepers to personal genomic information. Increasing popularity of next generation sequencing puts a premium on ensuring that those who are charged with interpreting, translating, communicating and managing commercial genomic risk information are appropriately equipped for the job. To shed light on their gatekeeping role, we conducted a study to assess how and why early clinical users of genomic risk assessment incorporate these tools in their clinical practices and how they interpret genomic information for their patients. Methods and Findings We conducted qualitative in-depth interviews with 18 clinicians providing genomic risk assessment services to their patients in partnership with DNA Direct and Navigenics. Our findings suggest that clinicians learned most of what they knew about genomics directly from the commercial laboratories. Clinicians rely on the expertise of the commercial laboratories without the ability to critically evaluate the knowledge or assess risks. Conclusions DTP service delivery model cannot guarantee that providers will have adequate expertise or sound clinical judgment. Even if clinicians want greater genomic knowledge, the current market structure is unlikely to build the independent substantive expertise of clinicians, but rather promote its continued outsourcing. Because commercial laboratories have the most “skin in the game” financially, genetics professionals and policymakers should scrutinize the scientific validity and clinical soundness of the process by which these laboratories interpret their findings to assess whether self-interested commercial sources are the most appropriate entities for gate-keeping genomic interpretation.

Tracking U.S. Professional Athletes: The Ethics of Biometric Technologies

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: (1) validity and interpretation of data; (2) increased surveillance and threats to privacy; (3) risks to confidentiality and concerns regarding data security; (4) conflicts of interest; and (5) 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 monitoring employees is viewed as useful for safety or to maximize labor potential.