Yesterday (5/21), while the decidedly partisan deals were being cut on tax reform, one Senate committee was hard at work crafting a bipartisan solution that actually benefits workers for a change. The Senate’s Health Education Labor & Pensions (HELP) Committee unanimously (!) 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. While Democrats and Republicans rarely agree on anything in the Senate these days, this bill passed as a result of a compromise on Tuesday night by nine senators, including the leaders of both parties. (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. (See Kansas City Star article.) According to a more detailed summary prepared by the HELP Committee, 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.

Given the bill’s strong bipartisan recommendation from the HELP Committee, it is expected to easily pass the Senate. Its fate is more uncertain in the House of Representatives, however. 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. The bill also has the support of Tommy Thompson, Secretary of Health & Human Services (HHS), who indicated his support in a recent letter to HELP Chair Sen. Judd Gregg (R-NH). It is hoped that the Senate’s action yesterday finally represents significant progress, and will lead to swift passage of new protections against genetic discrimination.

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