After seven years of negotiation and debate, on May 21, the Senate Health, Education, Labor, and Pensions Committee approved legislation (S. 1053) that would prohibit employers and health insurance companies from discriminating against applicants based on genetic information. Sponsored by Sen. Olympia Snowe (R-ME), the measure was approved, by voice vote, with no debate and unanimous support among committee members. S. 1053 is expected to face no major opposition on the Senate floor. Both Senate Majority Leader Bill Frist (R-TN) and Minority Leader Tom Daschle (D-SD) supported the measure, and Health and Human Services Secretary Tommy Thompson issued a letter expressing the White House’s support for the proposal. President Bush called on Congress in 2001 to enact a ban on genetic profiling in hiring and insurance.
“It is difficult to imagine more personal or more private information than a person’s genetic makeup,” said Ranking Member Edward Kennedy (D-MA). “It should not be shared by insurers or employers, or used in making decisions about health coverage or a job. It should only be used by patients and their doctors to make the best health decisions they can.”
Under S. 1053, insurance companies and employers would be prohibited from using the results of genetic tests to deny coverage, raise insurance premiums, or to make hiring decisions. With existing gene tests able to predict a person’s risk for heart disease, Alzheimer’s, and some cancers, medical advocates have worried that fears of losing a job or health coverage have precluded people from accessing the potentially life-saving genetic profiles. The Senate bill would bar insurance companies and employers from requesting genetic tests and would apply the same procedures and remedies as other forms of discrimination, such as race under the 1964 Civil Rights Act, and disabilities under the Americans with Disabilities Act of 1990. Workers could sue employers that violated the rules.
Committee Chair Judd Gregg (R-NH) said S. 1053 “establishes in federal law basic legal protections to enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies. The bill protects the privacy of genetic information. And it protects individuals from discrimination in health insurance or employment, based on their genetic information. It ensures that a woman with breast cancer and the healthy daughter who shares her genetic predisposition for the disease are both protected.”
Similar legislation (H.R. 1910) has been sponsored in the House by Rep. Louise Slaughter (D-NY).
