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By John Russell

November 15, 2003 | In an important step toward passing federal legislation safeguarding individual genetic privacy, the U.S. Senate last month passed the Genetic Information Nondiscrimination Act of 2003 (S. 1053) by an overwhelming vote of 95-0.

The bill had languished for six years in Congress in one form or another. Even now, the House of Representatives version (H.R. 1910) is stuck in committee -- though it appears to have enough support to pass if brought to the floor. President Bush has indicated he would sign the legislation if it reaches his desk.

The Senate bill, introduced and championed by Sens. Olympia Snowe, R-Maine, and Tom Daschle, D-S.D., prohibits employers, employment agencies, and labor organizations from using individual genetic information in hiring, firing, and training decisions. Employers are also prohibited from soliciting or purchasing genetic information. Similar restrictions apply to the health insurance industry.

Opposition from several business groups – notably, the Health Insurance Association of America (HIAA) -- helped stall the legislation. But the sequencing of the human genome, several recent “genetic discrimination” cases, and support from Senate Majority Leader Bill Frist, R-Tenn., helped break the logjam.

Francis Collins, director of the National Human Genome Research Institute, and J. Craig Venter, former rivals in the race to sequence the human genome, praised the Senate action.

“The bill is very important, and we have high hopes it will pass both houses this year and be signed into law,” Collins says. “No one should lose his job because of the genes he inherited. No one should be denied health insurance because of her DNA. But genetic discrimination affects more than jobs and insurance. It slows the pace of science. We know that many people have refused to participate in genetic research for fear of genetic discrimination.”

Venter concurs. “This is a very important first step,” says the former CEO of Celera Genomics and head of The Center for the Advancement of Genomics. He related the tardiness to enact genetic nondiscrimination legislation with a reluctance to provide broader healthcare. “There are roughly 44 million uninsured people in this country. We’re like an underdeveloped country [on this issue],” he says.

Kill Bill
While the American Medical Society (AMA) and the Biotechnology Industry Organization (BIO) praised the Senate action, HIAA called the action unwise.

“[H]ealth insurers continue to believe it will only add unnecessary and costly regulatory burdens without, in any way, improving consumer protection,” said Donald Young, HIAA president, in a statement. “Current federal law already provides plenty of security to consumers. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits employer-sponsored group health plans from using genetic information to refuse coverage, cancel coverage, charge higher premiums, or impose pre-existing conditions.”   

Now the battle moves to the House, where Rep. Louise Slaughter, D-N.Y., has led the fight for many years.

"It should have passed long ago,” Slaughter says. “Genetic discrimination is an insidious threat to privacy, public health, and medical research. Most people do not even realize that their employers and insurers can gather genetic information about them without their knowledge and then use it to fire them or deny coverage.” 

Three different House committees -- Energy and Commerce; Education and the Workforce; and Ways and Means -- have control over different portions of Slaughter’s House bill. Slaughter has gathered 221 co-sponsors, more than the 219 needed to pass the bill for the House. Staunchest opposition is reportedly coming from the Energy and Commerce committee, chaired by W.J. “Billy” Tauzin, R-La.

John Boehner, chairman of the Committee on Education and the Workforce, has said he will hold hearings on the Senate bill, although not when. The bills are very similar except for tougher enforcement provisions in the House version. 

Sidebar: Senate Bill S. 1053 -- The Fine Print

Excerpts from the Senate’s summary of the new genetic nondiscrimination legislation. For more information, go to


“Makes it an unlawful employment practice for an employer, employment agency, labor organization, or training program to discriminate against an individual or deprive such individual of employment opportunities because of genetic information.

“Prohibits the collection of genetic information except: (1) where health or genetic services are offered by the employer; (2) where an employer needs certain information to comply with the certification provisions of the Family and Medical Leave Act of 1993 or with State family and medical leave laws; (3) where an employer purchases documents that are commercially and publicly available that include family medical history; or (4) where necessary to monitor the effects of toxic substances in the workplace (when authorized by the employee or as required by law).”


“Prohibits a group health plan, a health insurance issuer, or an issuer of Medicare supplemental policies from using or disclosing genetic information for purposes of underwriting, determining eligibility to enroll, or premium rating.

“Prohibits such entities from using or disclosing genetic information for the creation, renewal, or replacement of a plan, contract, or coverage for health insurance or benefits. Prohibits such entities from requesting, requiring, or purchasing genetic information concerning a participant, beneficiary, or enrollee prior to the enrollment and in connection with such enrollment of such individual under the plan, coverage, or policy.”


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