Privatizing Biomedical Citizenship
By Jonathan Kahn,
HealthLawProf Blog
| 03. 03. 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...
Related Articles
By Sarah Zhang, The Atlantic | 03.18.2024
People are discovering the truth about their biological parents with DNA—and learning that incest is far more common than many think.
When Steve Edsel was a boy, his adoptive parents kept a scrapbook of newspaper clippings in their bedroom closet...
By Antonio Regalado, MIT Technology Review | 03.20.2024
There is a new most expensive drug ever—a gene therapy that costs as much as a Brooklyn brownstone or a Miami mansion, and more than the average person will earn in a lifetime.
Lenmeldy is a gene treatment for metachromatic...
By Carl Zimmer, The New York Times | 03.10.2024
In 1889, a French doctor named Francois-Gilbert Viault climbed down from a mountain in the Andes, drew blood from his arm and inspected it under a microscope. Dr. Viault’s red blood cells, which ferry oxygen, had surged 42 percent. He...
By Nick Paul Taylor, BioSpace | 03.14.2024
A U.K. watchdog balked at the cost-effectiveness of Vertex Pharmaceuticals’ CRISPR-based sickle cell disease therapy Thursday, recommending against funding the treatment unless uncertainties can be cleared up satisfactorily.
The U.K. became the first country to authorize Vertex’s Casgevy (exagamglogene...