Beyond Protecting Genetic Privacy: Understanding Genetic Discrimination Through Its Disparate Impact on Racial Minorities

Abstract

At the very end of the last century, scientists produced the first draft of the whole human genetic sequence. But that was just the first step; the hard work of the first few decades of this century will be to learn more about how to apply genetic information to improve health. As the pace of technological development accelerates and we learn more about what genetic variations mean about individual human characteristics and health risks, so too does the risk and consequences of the misuse of such information become more significant. The principal answer to this challenge has been to safeguard privacy by constructing legal and technical barriers that conceal and anonymize genetic information. While it may be a worthwhile objective, ultimately privacy protections will likely fail in practice. If this is so, how can we prevent genetic information from being used to categorize, stigmatize, and subordinate? This Note approaches this problem by analyzing the African American experience with genetic discrimination in the United States. African Americans have confronted the adverse consequences of genetic research in ways that can serve as a foundation to understand future threats posed to racial minorities and everyone in society, as genetic testing increases in prevalence and the privacy of genetic information is unable to be protected. Studying the real history of genetic discrimination, rather than merely speculating about what may happen, can point toward policy solutions that go beyond ―genetic privacy.‖ As genetic information becomes more plentiful and valuable, policies to prevent the misuse of that information will benefit everyone, regardless of race or ethnicity.