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 flaw--it 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.

Prenatal genetic testing is becoming increasingly common. In fact, in January 2007 the American College of Obstetricians and Gynecologists (ACOG) issued guidelines recommending prenatal screening for Down Syndrome for all pregnant women, and some studies show that when women receive a prenatal diagnosis of Down Syndrome, as many as nine out of ten abort. Already women who receive test results showing a possible disability are pressured to abort. The pressure to abort would become even more powerful if a decision not to abort places a job in jeopardy or a health insurance company threatens to withdraw health benefits.

Similar concerns arise in the context of in vitro fertilization (IVF). Some IVF practitioners already employ "preimplantation genetic diagnosis" (PGD) to eliminate embryos who carry genes that will produce future disorders--a practice that would become more widespread if insurance companies could demand such tests as a condition to funding the IVF process.

Recognizing these serious defects in the original GINA bill, Congressman Stupak last year announced his intention to offer a pro-life amendment in the House Energy and Commerce Committee. This led to an extended negotiation between Congressman John Dingell (D-Mi.), who is the powerful chairman of the committee, GINA prime sponsor Rep. Louise Slaughter (D-NY), and Stupak.

Eventually an agreement was reached that addressed the full scope of the pro-life concerns. The agreed-on language was inserted into the bill, and was retained throughout the rest of the legislative process.

Under the negotiated language, the final bill prohibits employers and insurers from discriminating against a woman or her family on the basis of genetic information about "any fetus carried by such pregnant woman." For example, it would be unlawful for an insurer to exert financial pressure on a mother to abort an unborn child who prenatal testing revealed to have a serious genetic disorder.

Likewise, the negotiated language prohibits discrimination on the basis of genetic information about "any embryo legally held by the individual or family member."

In addition, the final bill provides full protection for any child who has been placed for adoption, even if the adoption has not been finalized.

Deirdre McQuade, an official with the U.S. Conference of Catholic Bishops, praised the legislation for extending protection against discrimination to "some of the most vulnerable members of the human family, whether born, yet to be born, or placed for adoption."

"No one should be discriminated against on the basis of genetic testing," McQuade said.

NRLC Legislative Director Douglas Johnson explained that NRLC had resisted earlier versions of the GINA, but was pleased to support the legislation after the addition of the changes negotiated by Congressman Stupak. The final bill, he said, "provides some very important protections for all Americans who believe that the 'pick of the litter' approach should not be applied to human beings."