Genetic Privacy and Discrimination: What the Federal and State Government Are Doing, Aren't Doing, and Should Be Doing

Michael Yesley
Los Alamos National Laboratory
Los Alamos, NM 87545
voice: 505.667.3766, Fax: 505.665.4424, msy@lanl.gov

Advances in genetics are making it possible to generate increasing amounts of sensitive information about individuals. Although the potential benefits of this knowledge are substantial, there are also potential harms from undesired disclosures and unfair uses of genetic information. To protect against these harms, Congress and many state legislatures are beginning to consider and adopt laws that prohibit various practices involving genetic information. Many of these measures are too narrow, too broad, or misdirected, due to jurisdictional limitations and the novelty and complexity of the subject matter. Furthermore, the conflicting demands of those who would be affected by the measures has slowed their adoption or narrowed their reach.

We are reviewing current and proposed laws and regulations aimed at protecting genetic privacy and barring genetic discrimination, to determine what are the issues and most appropriate solutions. In some cases the solutions will be unclear: society must decide if fairness requires equal treatment of genetic difference.