AAAS Sponsors Congressional Briefing on Science of Genetic Testing

AAAS led a briefing on Capitol Hill on 13 June 2001, to examine concerns that genetic information could be used to discriminate unfairly against people, particularly those seeking employment and insurance benefits.

The hour-long meeting on genetic testing and on whether genes or the environment have a greater impact on health was one of a series of Congressional briefings organized by the AAAS Directorate for Education and Human Resources Programs and by the AAAS Directorate for Science and Policy Programs, through its Center for Science, Technology, and Congress. The event, moderated by Shirley Malcom, Director of the Directorate for Education and Human Resources, brought together more than 70 Congressional staff and other members of the public to hear the words of researchers Neil Holtzman of Johns Hopkins University and Kenneth Schaffner, of George Washington University.

"There is lots of optimism that legislation on genetic testing will come to a vote, so legislators must have a good sense of the science and its implications, and we can provide them with that information," said Mark Frankel, Director of the Scientific Freedom, Responsibility and Law Program, a division of the Directorate for Science and Policy Programs. "We are not trying to set policy. This is a purely educational process, but legislators do have to understand the science that is at the heart of these policy issues."

In his talk entitled, "The Science and Regulation of Genetic Testing," Holtzman said he noted that most tests are for rare diseases, and that scientists are finding it harder than expected to identify "inherited genetic variants (alleles) strongly associated with common complex diseases, and, concomitantly, highly predictive tests for those alleles is proving much more difficult than many scientists anticipated."

Representative Louise Slaughter (D-NY), who sponsored the AAAS briefing with Representative Constance Morella (R-MD), said that Holzman and Schaffner, whose talk was entitled "Genes and Environment: Is It Nature or Nurture," had left her with the sense that "our understanding of genes and disease risk is still in its infancy," and that "environment plays a major, and little-understood, role in the action of genes."

"As a result," Slaughter added, "we cannot accurately predict whether or not a particular individual will actually get sick based on their genetic makeup. Genetic discrimination would inevitably be based on poor and/or misunderstood information."

Slaughter noted that scientific briefings are particularly important to Congressional staff because, "very few Representatives have any background in health or science, and staff turnover is frequent. As a result, we need to continually update Congressional offices and ensure that they have the basic information needed to evaluate legislative proposals related to genetics."

Slaughter is sponsoring HR 602, a bill that would ban discrimination based on genetic information in employment and health insurance. She says that support for the bill is strong in the US Senate, where Majority Leader Tom Daschle and Senator Edward Kennedy, chairman of the Health, Education, Labor and Pensions Committee, have promised to consider the legislation before August. In the House, however, "the situation is more murky," Slaughter said. "H.R. 602 has been cosponsored by 246 bipartisan cosponsors dozens more than are needed to be approved but no committee or subcommittee has ever held a hearing on genetic discrimination."

AAAS established the Center for Science, Technology, and Congress in July 1994 with funding from the Carnegie Corporation of New York and the Burroughs-Wellcome Fund. The Center provides information to Congress on current science and technology issues and assists the science and engineering community in understanding and working with Congress.

The Center publishes the newsletter Science and Technology in Congress monthly when Congress is in session. In addition to regular sections covering the status of major legislation and new reports and publications, the newsletter reports on current S&T issues being discussed and debated in Congress.

More information on the briefings is available at the AAAS Science & Policy Programs Website, or by writing to the following email address: congress_center@aaas.org.