As Legislative Debate and DNA Anniversary Nears,
AAAS Urges "Strong Protection" from Genetic Discrimination

Policy experts at AAAS today reiterated their support for strong protection from any misuse of genetic information, routing a letter to U.S. policymakers preparing for debate on genetic discrimination legislation.

The forthcoming legislative debate will nearly coincide with the 50th anniversary of the discovery of the double-helix structure of DNA, life's genetic blueprint. (See www.aaas.org/news/genome.)

"The completion of the human genome sequence has raised hopes of a medical revolution that will lead to major health advances," said Alan I. Leshner, chief executive officer of AAAS and executive publisher of its journal, Science. "To take full advantage of this momentous scientific achievement, however, we must ensure the highest levels of public confidence that the genetic knowledge gained about individuals and groups will be used appropriately to improve health and not to discriminate unfairly against people."

Leshner asked policymakers to consider the following key points about genetic information, proposed by a working group convened by AAAS:

• Individuals should be able to gain information about their genetic makeup, but should be able to protect themselves against discrimination by controlling access to such information.
• Genetic information should be used only to enhance, not undermine, an individual's quality of life. Society, therefore, in pursuit of the common good, has a responsibility to protect citizens against the misuse of genetic information.
• Policies should be adopted to ensure opportunities for people to participate in research studies and clinical trials without fear that their genetic information could adversely affect their health insurance status.

To view the complete statement, please see www.aaas.org/spp/dser/bioethics/resources/gdiscrim.shtml. Reporters needing comment on genetic discrimination are invited to call AAAS at (202) 326-6440, or send email to scipak@aaas.org, to request interviews.

—Coimbra Sirica

24 March 2003