Genetic Testing Explored in Congressional Briefing

Health Care Financing Review, Summer 2001 | Go to article overview

Genetic Testing Explored in Congressional Briefing


The American Association for the Advancement of Science (AAAS) led a briefing on Capitol Hill on June 13 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 Holtzman 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. …

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