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Senate approves genetic privacy; House action on bill uncertain

WASHINGTON (BP)–Legislation halfway through Congress would prevent employers and insurance companies from discriminating against Americans based on their genetic information, and the action is coming none too soon, a Southern Baptist bioethicist said.

The Senate approved the Genetic Information Nondiscrimination Act in a 95-0 vote. The bill would prohibit employers from using genetic information in hiring, firing and other employment decisions. It also would bar discrimination by insurance companies against those seeking to be insured.

The House of Representatives has yet to act on similar legislation. A bill introduced by Rep. Louise Slaughter, D-N.Y., has 229 cosponsors. She is calling for the House to act quickly on the Senate version, a spokesperson for the congresswoman said, but the Republican leadership has not indicated a willingness to move the Senate bill.

Action on the bill is “long overdue,” said Ben Mitchell, a consultant with the Southern Baptist Ethics & Religious Liberty Commission. “The American people need the strongest possible measures to protect genetic privacy and to make discrimination based on someone’s genetic information illegal.”

Such protection is not only needed currently but for future generations as well, Mitchell said.

“We forget sometimes that our genetic samples and our genetic information can be stored indefinitely,” said Mitchell, an associate professor of bioethics and contemporary culture at Trinity Evangelical Divinity School in suburban Chicago. “That means it is subject to testing again in 10, 20 or 100 years. So not only is our own genetic privacy at stake, but so is our children’s and grandchildren’s.”

The legislation is needed to give Americans the confidence to use genetic testing to protect their health, said Sen. Olympia Snowe, R-Maine, the chief sponsor who first introduced a bill protecting genetic privacy in 1996. Some people have bypassed genetic screening out of fear they would be discriminated against in the workplace or in seeking insurance, she said. When the National Institutes of Health offered women genetic testing for breast cancer risk, nearly 32 percent of those who were offered the test refused to take it because of concerns about insurance discrimination, Snowe said.

“It simply isn’t right that the very information which may lead to a healthier life and the prevention of a disease may also lead to the denial of health insurance or higher rates,” Snowe said in a written statement after the Oct. 14 vote. “Americans shouldn’t have to make a choice between taking charge of their own care or keeping their insurance. We simply can’t allow science to outpace public policy on this potentially life-or-death issue.”

Researchers have made rapid progress in recent years in discovering genes that have the potential to produce diseases, especially through the successful 10-year effort to map the human genome.

The Senate-approved bill, S. 1053, will bar employers and insurance companies from collecting genetic information on people prior to employment and enrollment, respectively. Some exceptions would be made for employers. The measure would prohibit employment discrimination not only in hiring and firing, but also in the cases of promotions and assignments. The measure would block insurers from not only denying coverage but also from setting premiums based on genetic information.