(New York, NY -- February 17, 2005) -- Hadassah, the Women’s Zionist Organization of America, praised the Senate for its unanimous approval (98-0) of the “Genetic Information Non-Discrimination Act” (S. 306). The Senate passed identical legislation in 2003 and had President Bush’s support, but the House of Representatives failed to act and the bill died when the last Congress adjourned. For nine years Hadassah’s 300,000 members have led the fight for protection against health insurance and employment discrimination on the basis of genetic information.
June Walker, National President of Hadassah, said: “We are very pleased that the Senate has passed this bill, which represents a positive step forward for medical research. Genetic studies have led to the development of many screening tests and treatments for genetic diseases. But as science races ahead, individuals are hesitant to submit to genetic tests for fear of health insurance and employment discrimination. The Senate’s approval of genetic non-discrimination legislation is a significant move towards eliminating those fears. We now strongly urge the House of Representatives to quickly follow suit.
“Hadassah is pleased that the legislation would ban all health insurance companies - in both the individual and group markets - from raising premiums or restricting enrollment based on genetic information. It would also prohibit employers from discriminating against employees based on genetic information.”
In 1995, researchers at the Hadassah Medical Center in Jerusalem collaborated with the National Institutes of Health to study a genetic mutation called BRCA1, which has been linked to some forms of breast cancer. Subsequent medical research found that some genetic mutations predisposing individuals to certain forms of cancer have particularly high frequencies among Ashkenazi Jews. Since 1996, the effort to ban genetic discrimination has been Hadassah’s top domestic priority and it has taken the following actions:
In 1996, researchers at the Dana Farber Cancer Institute sought to initiate a large-scale study of BRCA1 and approached the Boston Jewish community to participate. The Boston Jewish community declined, citing inadequate protections against genetic discrimination. Realizing that fears of genetic discrimination were preventing individuals from participating in important medical research, Hadassah, in 1996, passed a policy statement resolving to advocate for legal protections against genetic discrimination.
In 1998, Hadassah convened the first Jewish Leadership Meeting on Genetics, bringing together Jewish community activists and genetic researchers to ensure the continued participation by the Ashkenazi Jewish community in critical genetic research within a framework where risks to the community are considered and minimized.
Later that year, Hadassah participated in meetings, sponsored by the National Institutes of Health, National Human Genome Research Institute (NHGRI), and the National Bioethics Advisory Commission, convened to involve diverse communities in genetics research.
Hadassah has twice provided Congressional testimony on this issue. In 1998, Hadassah testified before the Senate Committee on Labor and Human Resources. In 2001, Hadassah provided testimony to the House of Representatives’ Committee on Energy and Commerce, Subcommittee on Commerce, Trade and Consumer Protection in a hearing on the potential for health insurance discrimination based on predictive genetic tests.
In 2000, Hadassah developed It's In The Genes, an educational program about the science of genetics, the impact of genetic information on individuals and families and the issue of discrimination in employment and insurance. Thus far the program has been presented in over 50 communities through symposia and seminars, and more than 50,000 informational brochures have been distributed.