Genetic Testing: What You Need to Know
Capitol Hill Briefing
August 29, 2001
Urging a Cautious Approach for Genetic Testing Proposals
When it considers legislation aimed at preventing genetic discrimination, Congress should proceed with extreme caution.
That was the advice of Academy experts at a standing-room-only Aug. 29 Capitol Hill briefing on genetic testing.
"We are concerned about unintended consequences," said Cecil Bykerk, a member of the Academy's Board of Directors and its Task Force on Genetic Testing Issues. "Science is changing daily with respect to genetics. We have to be aware that we are passing legislation that might be interpreted very differently in the future."
Both the Senate and the House are expected to hold hearings this fall on bills to prevent genetic discrimination by insurers. Senate Majority Leader Thomas Daschle (D – S.D.) is the top sponsor of S. 318 and is pushing for passage this year. The House is considering a similar bill (H.R. 602), whose lead sponsor is Rep. Louise Slaughter (D – N.Y.).
Daschle's bill would prohibit discrimination in health insurance enrollment, eligibility, and contribution rates, based on genetic information. It would also prohibit health insurers from requesting, requiring, collecting, purchasing, or disclosing genetic information unless authorized to do so by the individual.
Both bills define genetic testing very broadly, said Bykerk. Daschle's bill, for instance, defines a genetic test as the "analysis of human DNA, RNA, chromosomes, proteins, and metabolites that detect genotypes, mutations, or chromosomal changes."
"With that description, you've just described everything that you have in your body," Bykerk said.
Such proposals could hobble the industry's ability to underwrite, Bykerk warned. "If we want a private insurance system, some kind of underwriting has to take place," Bykerk said.
Life insurers don't currently require genetic tests, but would be concerned if the insured has information about his or her health that the insurer doesn't have, said Arnold Dicke, a member of the Academy's Committee on Federal Life Insurance Issues and former Academy vice president for life insurance issues.
"Some of the answers that work for health insurance don't work equally well for life insurance," Dicke said, explaining that life insurance—sold to individuals is a long-term coverage that cannot be cancelled by the insurer, involving cash benefits that are large relative to the periodic premium paid. The risk of anti-selection is signifcant and could impact both insurer profitability and the rates paid by the public.
More than 100 House and Senate staffers, journalists, other policy-makers, and lobbyists attended the luncheon briefing. Cori Uccello, the Academy's senior health fellow, introduced the speakers.
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