106 Pages Posted: 11 Jul 2014 Last revised: 13 Nov 2014
Date Written: 2014
Genomic research is at an impasse. In the decade since the completion of the first draft of the human genome, progress has been made but few of the grandest promises of genomics have materialized. Biomedical researchers largely agree that one critical thing is essential to propel genomics into the future and maintain its legitimacy: more bodies. This article will examine recent efforts at massive recruitment of subjects to participate in biomedical research and argue that such efforts, while clearly motivated by a desire to drive biomedical research to its next stage of promised critical breakthroughs, also promote a privatized conception of citizenship that configures citizens’ duties as serving, not the public good, but rather the good of private corporations – pharmaceutical manufacturers in particular. This reconfiguration of citizenship, in turn, implicates the allocation of related public resources to support drug development.
In a prominent 2009 article, Ezekiel Emanuel, then Chief of the Department of Bioethics at the NIH (and brother to President Obama’s chief of staff, Rahm Emanuel), and colleagues made the case for a citizen obligation to participate in biomedical research. This paper critically examines such calls in relation to several recent federal initiatives directly seeking to enlist subjects into massive biomedical research enterprises (including a call to create a national biobanks, the Genetic Information Non-Discrimination Act, the Million Veteran Program, proposed revisions to the Common Rule governing the regulation of human subjects research, and the newly created National Center for Advancing Translational Research (NCATS)). By taking an interdisciplinary approach to explore the intersections of law, science, commerce, and ideology, it argues that these efforts do not only aim to drive biomedical research forward but also to reconfigure citizenship itself to serve, not the public good, but rather the good of private corporations – pharmaceutical manufacturers in particular. In the process, these efforts construct a model of citizenship that imposes duties without rights while redistributing the risks of biomedical research away from private corporations and onto the public.
Keywords: Citizenship, Bioethics, Biomedical Research, Risk, Privatization, Health Care, Pharmaceuticals, Human Subject Protection
JEL Classification: A1, D3, D63, G38, I1, I11, I18, K2, L33
Suggested Citation: Suggested Citation
Kahn, Jonathan D., Privatizing Biomedical Citizenship: Risk, Duty, and Potential in Circle of Pharmaceutical Life (2014). Minnesota Journal of Law, Science & Technology, Vol. 15, No. 2, 2014. Available at SSRN: https://ssrn.com/abstract=2464253