In January, the Genetic Information Nondiscrimination Act (GINA) was reintroduced in the House of Representatives by the bipartisan team of Representatives Slaughter, Biggert, Eshoo, and Walden; and in the Senate by Senators Snowe, Kennedy, Enzi, and Dodd. The bill prohibits health insurers from requesting genetic testing and from using genetic information to deny enrollment or set premiums. The legislation also prohibits employers from using genetic information to make hiring, firing or promotion decisions. This legislation is of particular significance to members of the bleeding and clotting disorders community who may be subject to discrimination because of genetic status, or may be discouraged from seeking confidential genetic testing out of fear of possible discrimination.
Last year, the legislation passed in the Senate but was blocked from reaching the floor of the House despite broad support. As a result, it must be reintroduced in both the House and Senate this session. The legislation is identical to last year’s bill and has widespread bipartisan support—more than 150 co-sponsors signed on in the first week. Senator Edward Kennedy (D-MA), Chairman of the Health Education, Labor and Pensions Committee, has indicated that the bill will also be introduced in the Senate.
The National Hemophilia Foundation (NHF) is a member of the Coalition for Genetic Fairness, which is composed of dozens of organizations and companies concerned about genetic discrimination. NHF and other coalition members have incorporated support for GINA into their advocacy agendas. On March 8, during NHF’s annual Washington Days, members of the bleeding disorders community from across the country will be asking House and Senate cosponsors to support this and other critical legislation. Last year, NHF Washington Days participants were successful in securing the support of dozens of legislators. For more information or to participate in NHF Washington Days 2007, please click here.