Does genetic information warrant special legal protection, and if so how should it be protected? This essay examines the most recent (and indeed only) significant effort by the US government to prohibit genetic discrimination, the Genetic Information Nondiscrimination Act (GINA). We argue that the legislation is unlikely to have the positive impact sought by advocates of genetic privacy and proponents of biobanks. In part, GINA disappoints because it does too little. Hailed by its promoters as “the first civil rights act of the 21st century,” GINA’s reach is in fact quite modest and its grasp even more so. But GINA also fails by trying to do too much, tying the hands of insurers and employers in ways that may fail to serve the interests of individuals or society more generally. In short, if genetic discrimination is a problem that needs to be solved, GINA is not the solution. Instead, the Act creates a number of new and possibly intractable problems that may be more troublesome than what it originally set out to resolve.
Genetic Information Nondiscrimination Act (GINA), employment and insurance law, genetics research, risk profiles and classification, fair discrimination, Norman-Bloodsaw v. Lawrence Berkeley Laboratory, Burlington Northern Santa Fe Railroad Company v. EEOC
Comparative Issues in the Governance of Research Biobanks: Property, Privacy, Intellectual Property, and the Role of Technology
Feldman, Eric A. and Darnell, Chelsea, "Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States" (2013). All Faculty Scholarship. 1550.
Civil Rights and Discrimination Commons, Genetic Phenomena Commons, Genetics Commons, Health Law and Policy Commons, Insurance Law Commons, Labor and Employment Law Commons, Law and Society Commons, Medical Jurisprudence Commons, Policy Design, Analysis, and Evaluation Commons, Privacy Law Commons, Public Law and Legal Theory Commons, Science and Technology Law Commons, Science and Technology Policy Commons