You Are Born with Your Genes: Justice and Protection against Discrimination in the Use of Genetic Information



Genetic information poses an apparent paradox for justice in health care. On the one hand, genetic information seems to be exactly the kind of information that it is unjust to take into account in the distribution of important goods. On the other hand, genetic information may increasingly become useful in individual patient care as evidence for personalized medicine increases. Although it is important to emphasize the difference between genetic information and the social construct of race, nonetheless, the historical interplay between discrimination based on assumptions about heritability and discrimination based on race are significant. Thus, this article defends the importance of paying very close attention to protections in the use of genetic information. Three current examples of inadequate protection are cited. First, informed consent to genetic testing should incorporate potential confidentiality risks raised by this information. Second, the Genetic Information Nondiscrimination Act is too porous to protect employees from their employers' possession of genetic information; if such information is used in discriminatory ways, burdens of seeking protection then fall on the employees. More stringent strategies for protecting information are thus desirable. Finally, current designs of interoperable health records fail to allow for the sequestration of genetic information. Efforts to develop such sequestration techniques should be encouraged; among other benefits, they would be helpful in shielding genetic information from employers. Mt Sinai J Med 77:188–196, 2010. © 2010 Mount Sinai School of Medicine