Privatizing Biomedical Citizenship

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...