Introduction to the Workshop
URLs Provided by Attendees

Abstracts

Mapping

Informatics

Sequencing

Instrumentation

Ethical, Legal, and Social Issues

Infrastructure

The electronic form of this document may be cited in the following style:
Human Genome Program, U.S. Department of Energy, DOE Human Genome Program Contractor-Grantee Workshop IV, 1994.

Abstracts scanned from text submitted for November 1994 DOE Human Genome Program Contractor-Grantee Workshop. Inaccuracies have not been corrected.

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
505/667-3766, Fax: /665-4424, Internet: 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.