COMMENTARY | Genetic Information non-Discrimination Act Passage of GINA legislation is important milestone


The passage of the “Genetic Information Nondiscrimin-ation Act” (GINA) (H.R. 493) is a triumph for American citizens and their civil rights.

The mapping of the human genome and the advances in genetic medical research have helped to isolate genetic traits which cause a variety of illnesses. However, until GINA was passed in the House and Senate and signed into law by President Bush on May 21, citizens avoided testing for these traits fearful they would be discriminated against by their employer or their health insurance company.

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This legislation is of particular interest to the Ashkenazi Jewish population which, in addition to having an increased risk for the BRCA1 and BRCA2 genetic mutations associated with breast and ovarian cancer, also has a higher incidence of lesser known mutations including Tay Sachs and Gaucher’s.*

GINA provides the opportunity for individuals to participate in clinical trials without fear of genetic discrimination and to access appropriate genetic testing and screening without concern that the results might cause them to lose their health insurance. Nancy Falchuk, National President of Hadassah, the Women’s Zionist Organization of America, commented, “GINA ensures that no individual will have to choose between health information and their job or between health information and health care.” Hadassah, WZOA, has helped to lead the charge on behalf of the American Jewish community for more than a dozen years.

In 1996, Hadassah passed a policy statement resolving to advocate for legal protections against genetic discrimination and has tirelessly lobbied Congress for the adoption of meaningful federal protections from the misuse of genetic information.

Hadassah has worked closely with GINA’s sponsors to ensure the inclusion of key components of the legislation and has twice provided Congressional testimony on this issue. In 2000, Hadassah founded the Coalition for Genetic Fairness, a nationwide coalition of civil rights, patient, health care and industry groups and employers that campaigns for the passage of federal genetic nondiscrimination legislation and educates the public about these protections.

An email from David Bowen, (Chief of Staff to Senator Edward Kennedy [D-MA] who had been instrumental in getting the legislation passed) to Marla Gilson, lobbyist for Hadassah, stated, “Hadassah deserves a special thanks for your consistent, energetic and skilled advocacy. You really made an incredible difference.”

Representative Louise Slaughter (D-NY), a determined advocate for this legislation remarked, “This is a tremendous victory for every American not born with perfect genes — which means it’s a victory for every single one of us. Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination.”

With the passage of GINA, families can begin to broaden their conversations beyond the inevitable comparison of physical traits passed from one generation to the next. Now, serious health conversations with far-reaching implications can take place between parent and child, husband and wife, doctor and patient.

Joan Denison is Executive Director of St. Louis Chapter Hadassah, and Diane Maier is President of St. Louis Chapter Hadassah.

*Genetic diseases inherent in the Ashkenazi Jewish population will be discussed at St. Louis Chapter Hadassah’s June 18th program, “Our Heritage, Our Health,” Dinner program at 6:30 p.m., Ces & Judy’s at Le Chateau Village. Call 314-991-0434 for information.