Monday, March 3, 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. Over the past decade a series of distinct yet interrelated efforts at massive recruitment of subjects to participate in biomedical research, while clearly motivated by a desire to drive biomedical research to its next stage of promised critical breakthroughs, have also promoted 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 Emmanuel, 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. Such calls should to be viewed in relation to several recent federal initiatives directly seeking to enlist subjects into massive biomedical research enterprises including: a call by NIH Director Francis Collins to create a large scale biobank, 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). 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.
More specifically, what we see being elaborated through these diverse but interrelated federal initiatives is a model of citizenship wherein service to the public good is critically mediated by corporate interests. The drive to understand the genetic basis of common disease and develop new and more effective pharmaceuticals demands the massive enlistment of human subjects. The idea of a citizen obligation to participate in biomedical research is grounded in an argument that such participation serves the public good of better health of which we all partake. This argument elides the fact that the actual interventions being developed to realize this public good are privatized, placed in the hands of private corporations which thereby become essential mediators of citizenship and the public good. In this context, the rights of citizenship derive not form one’s status as a member of a political community but as the result of a market-like bargained for exchange in return for one’s participation in biomedical research. This is highly problematic for several reasons not least of which is the asymmetry of the resulting model wherein citizens have duties to participate but no concomitant rights to resulting healthcare; while corporations get a right to access the information contained in the bodies of the citizenry without bearing any concomitant duty to provide resulting therapies on reasonable terms. The model of placing the bodies of the citizenry at the disposal of pharmaceutical corporations is neatly bookended by the creation of the new NCATS which similarly places public research resources of the federal government at the disposal of corporate drug developers. The problem here is not that such strategies do not necessarily promote biomedical advancement; they may well prove very effective at doing so. The problem lies in the conception of citizen and the allocation of rights and duties implicit in this model. As diverse voices across the spectrum of health policy and biomedical research are calling upon us to go down this path, it is incumbent upon us to critically assess these implications before we choose whether or how to answer the call. For an extended discussion of these issues keep an eye out for my article: Privatizing Biomedical Citizenship: Risk, Duty and Potential in the Circle of Pharmaceutical Life, forthcoming in the Minnesota Journal of Law, Science and Technology.
-Guest Blogger Professor Jonathan Kahn