Congress Passes Bill to Ban Genetic Discrimination after Adding Pro-Life Language.

WASHINGTON (May 8, 2008)Congress gave final approval in early May to landmark legislation to ban genetic discrimination by employers and health insurance providers.

President Bush is expected to soon sign the legislation, the Genetic Information Non-discrimination Act (GINA) (H.R. 493).

The legislation has been under consideration in Congress for more than a decade. Until recently, it contained certain defects that made it impossible for the National Right to Life Committee and other pro-life groups to support it. But those defects were corrected in the current Congress due in large part to the work of Congressman Bart Stupak (D-Mi.), the co-chair of the House Pro-Life Caucus, resulting in a final bill that substantially advances pro-life interests.

The main thrust of the GINA is to ban discrimination in employment or health insurance on the basis of tests that show a person's genetic makeup. Advocates for the bill argued that as genetic information and testing becomes more prevalent, employers and health insurance providers would be increasingly likely to use that information to discriminate against persons with genetic predispositions to costly and debilitating diseases.

However, for years the legislation contained a fatal flawit defined "family member" to exclude unborn children.

Specifically, the original bill said that "the term 'family member' means with respect to an individual ... a dependent child of the individual, including a child who is born to or placed for adoption with the individual" [emphasis added]. This definition left unborn children, their mothers, and their entire families at risk of discrimination if the mother refused to undergo an abortion at the request of her employer or health insurance provider.

The risk of such discrimination is very real. In 1998, Jeremy Gruber, legal director for the American Civil Liberties Union, raised this concern in testimony before the Senate Labor and Human Resources Committee. For example, he said, "Consider further the pregnant woman whose fetus tested positive for cystic fibrosis and whose managed-care health plan limited coverage for her pregnancy and future child while offering full coverage should she choose an abortion."