Federal Genetic Nondiscrimination Act Nears Passage

Legislation that would prohibit employers and health insurance companies from discriminating against individuals based on those individuals' genetic makeup soon may become law.

The House overwhelmingly passed the Genetic Information Nondiscrimination Act of 2007, H.R. 493, (at the THOMAS Web site, type "HR 493" in the search box after selecting "Bill Number") in April, and the Senate is on the verge of passing similar legislation. President Bush supported the House legislation and is expected to sign a final bill negotiated between the House and Senate, said William Pewen, health policy adviser for Sen. Olympia Snowe, R-Maine, who sponsored the Senate bill.

Describing the House and Senate bills as "civil rights legislation," Pewen explained that the legislation is intended "to protect people from discrimination" based on their genetic composition, which includes immutable characteristics beyond any individual's control.

"This legislation will prohibit discrimination in health insurance based on your genetic makeup as well as preventing discrimination in employment, including hiring, firing, promotion and compensation," said Pewen in an interview with AAFP News Now.

Under the legislation, a health plan or insurance company cannot deny enrollment based on information about an individual's genetic testing results or genetic makeup and cannot set premiums based on genetic information. The legislation also prohibits insurance companies from requesting or requiring individuals or their family members to take a genetic test.

Similarly, employers are barred from "requesting, requiring or purchasing an employee's genetic information," except for certain specified purposes, according to a bill summary. Employers also are required to treat genetic information about an employee as part of the employee's confidential medical record.

The legislation is intended to recognize and keep pace with advancements in genetic testing, Pewen said. Until recently, only a limited number of genetic tests were available, and those tests often were able to detect only the most definitive genetic links to diseases such as breast cancer or Huntington's disease, which meant individuals who tested positive for the genetic anomaly involved usually were fated to contract the disease.

Genetic testing now can identify many more genetic anomalies associated with many more diseases and conditions -- some even associated with multiple conditions -- and the results do not always carry the certainty of developing the condition. Increasingly, individuals are able to use this information to take action to prevent, delay or treat such disorders, thus showcasing the ability of genetic testing to improve health, according to Pewen.

He added that the legislation would encourage individuals to use that expanding genetic knowledge to improve health. "That will translate into lower health care costs, tipping the balance of benefits for employers and health plans," Pewen said.