It is rare to find unanimity in the U.S. Senate, and almost unheard of to find unanimity on a bill that benefits workers more than businesses and insurers. Yet it happened today in the Senate, which unanimously (in a 95-0 vote) passed the Genetic Information Nondiscrimination Act (S 1053), a bill that would bar employers and insurance companies from discriminating against people based on their genetic histories. And what may be the most virtually unprecedented development of all: the bill is also supported by the Bush administration. Even that might not be enough to guarantee action in the House of Representatives, this year, however, and that’s a real shame. Once again, it may be up to how loudly workers speak out urging the House to take action this year on this bipartisan bill.

The scientific progress made in the last decade in mapping the human genome and identifying the source of many genetically caused illnesses and conditions makes it more important than ever to protect those who might be adversely affected by the disclosure of this information. As Dr. Francis Collins, head of the National Human Genome Research Institute, notes, “[genetic discrimination] could cause this wonderful revolution fueled by the genome project to actually be stillborn because people would be afraid of getting the information that otherwise be of great advantage to them for medical purposes.” (See ABC News article.) Dr. Collins also characterized the bill, as quoted in the title to this blog entry, as “a bill for people with DNA,” or a bill for everyone, which may explain at least in part, the bipartisan support. (See New York Times article.)

In short, the bill would bar health insurance companies from using genetic information to deny coverage or to set premiums, and would prohibit employers from using such information to hire or fire workers. Neither insurers nor employers could ask for genetic information or require people to take genetic tests. According to a more detailed summary prepared by the Senate’s Health, Education, Labor & Pensions Committee, which originally heard the bill, the bill:

Protects against genetic discrimination from health plans and insurance companies:

• Prohibits health insurance plans from denying an individual enrollment in the plan because of individual’s or family member’s genetic information.

• Prohibits health insurance plans from charging higher premiums to individuals because of individual’s or family member’s genetic information.

• Prohibits health insurance companies from basing premiums of a group health plan on genetic information of members (including family members) of the plan.

Keeps genetic information private:

• HHS privacy rules govern the use and disclosure of genetic information, except this bill also:

• Bans the use and disclosure of genetic information for insurance underwriting purposes.

• Bans the collection (i.e., requesting, requiring, and purchasing) of genetic information for purposes of underwriting.

• Prohibits insurance companies from collecting genetic information prior to enrollment in any plan.

Structure and Enforcement of Health Provisions:

• Creates a single federal standard for protection of genetic information, which does not exist today.

• Generally builds on the existing law framework under HIPAA. In doing so, this ensures that genetic

information is treated consistently with other health information and individuals, who face

discrimination, whether they are healthy, sick or disabled, have the same rights and remedies.

• The non-discrimination provisions are enforced in same manner as current law, however some

procedural protections are established for group health plan participants including the ability to seek

injunctive relief and to have retroactive reinstatement of coverage for violations. Penalties may be

payable to the individual or levied against the plan.

• The privacy provisions are enforced in the same manner as HIPAA privacy rules through HHS Office

of Civil Rights; with the same civil penalty and criminal enforcement structure.

Protects employees from genetic discrimination at the workplace:

• Prohibits the use of genetic information in employment decisions, such as hiring, firing, job

assignments, and promotions.

• Prevents the acquisition and disclosure of genetic information.

• Applies the same procedures and remedies as other forms of employment discrimination, such as race

under the Civil Rights Act of 1964 and disabilities under the Americans with Disabilities Act of 1990.

Supporters say the bill is long past due, given the advances in technology, including the mapping of the Human Genome and the development of tests that can predict whether a patient is vulnerable to a wide array of genetic disorders like breast cancer and neurological ailments like Huntington’s disease. But many people shy from the tests that might save their lives or lead to major scientific advances, fearing the loss of health insurance or a threat to their work. Some companies have even started performing genetic testing on their employees, even in the face of much legal uncertainty about whether such testing is legal. Last year, Burlington Northern Santa Fe Railway paid over $2 million to settle claims with employees who after developing symptoms for carpal tunnel syndrome, were forced to submit to genetic testing. (See Reuters article.) The passage of this legislation would prevent such future abuses, and encourage the lawful use of testing to promote scientific advances and better health, rather than impede employees’ employment and advancement.

The bill was first introduced in the Senate in 1997 (1997 version) by Sen. Olympia J. Snowe (R-ME), and then was aimed only at health insurers. While the idea attracted the support of prominent senators such as Sen. Bill Frist (R-TN), now the Republican leader, and Sen. Tom Daschle (D-SD), the Democratic leader, the measure nonetheless languished for several years. Insurers objected to language that they said would prevent them from collecting information that could help them manage the health care of patients with genetic diseases, so that section was removed. While Republicans wanted to limit the bill to health insurers, Democrats wanted to see it expanded to include employers; it now includes employers.

Business groups and insurers still object to the bill, however, which could doom its progress in the more conservative House of Representatives. One insurance group, the Health Insurance Association of America, called the bill “a solution in search of a problem.” (See New York Times article.) However, according to Dr. Collins of the Genome Project, fears of discrimination already have deterred potential participants of genetic research projects. In two studies of breast cancer and one of colon cancer, one-third of the individuals who were qualified to participate ultimately declined after hearing that there was no federal law against such discrimination, he said. (See Los Angeles Times article.) More incidents like this are certain to occur without more legal protections for those who participate in such research.

While the bill easily passed the Senate, its fate is more uncertain in the House of Representatives. A similar measure, the Genetic Nondiscrimination in Health Insurance and Employment Act (HR 1910), has been introduced in the House by Rep. Louise McIntosh Slaughter (D-NY), and already has over 140 cosponsors. Even though enacting the Senate bill instead of the House provision would move things forward more quickly, the House may slow things down by requiring that the bill have hearings. This would mean the bill would not pass this year before Congress adjourns, which could happen as early as the end of this month. (See Washington Post article.)

Workers must speak out now to demand that the House take action on the Senate bill this year; otherwise, the bill will languish at least until Congress resumes next January, and most likely even later, given that 2004 is an election year. Ask your representative to push for a vote on the Senate version of the bill this year in our Action Alert, as the House needs to be reminded how important this bill is for both scientific advancement and the protection of workers from discrimination.

Stop Genetic Discrimination: Support The Genetic Information Nondiscrimination Act

More resources on genetic discrimination:

Genetic Alliance Genetic Discrimination Resources

Genetic Information and the Workplace Enacted State Legislation

ACLU Genetic Discrimination in the Workplace Factsheet