US Genetic Information Nondiscrimination Act approved

9 May 2008

The US Genetic Information Nondiscrimination Act (GINA) has finally obtained congressional approval after several previous attempts failed on their way through the Senate and House of Representatives (see previous news).  The United States Congress is the bicameral legislature of the federal government of the US, consisting of two houses, the Senate and the House of Representatives, to whom senators and representatives are directly elected. The legislation was unanimously (95 votes to 0) approved by the Senate on 24 April 2008 and passed in the House of Representatives on 1 May 2008, by a vote of 414 to 1 (sole dissenter being Congressman Ron Paul).  It is anticipated that President Bush, who has expressed public support for the legislation, will sign the bill soon.

The long-awaited legislation, which has been debated in Congress for 13 years, requires equity in the provision of mental health and substance-related disorder benefits under group health plan and prohibits discrimination on the basis of genetic information with respect to health insurance and employment. It prevents insurers from refusing to provide health insurance to healthy people on the sole basis of genetic predisposition to a disease; it also prohibits them from requesting or using information from genetic tests in the pricing of long-term care insurance. Employers are also denied the right to request or use genetic test information in the process of employment of individuals or in the promotion or dismissal of staff.

Substantive and procedural objections were raised to the previous version of the approved legislation, bill H.R. 493, proposed in conjunction with the Paul Wellstone Mental Health and Addiction Equity Act of 2007 and passed the House on 25 April 2007 by a vote of 420-3. It was noted that there was no clear “firewall” between the provisions on genetic discrimination in health benefits provided by health insurers and plans, and those that addressed genetic discrimination in employment; further definition was sought in the relationship of the bill to other provisions of law, including various types of remedies; and it was felt that the bill might unintentionally permit “forum shopping.” There was also a concern that in the absence of clarification, the bill might be construed to prohibit health plans and issuers from using information about the manifested disease of a dependent covered by an individual plan for appropriate and routine insurance purposes.  Nevertheless, the need for nondiscrimination legislation was affirmed as critical to the realization of the full potential of genomic medicine.

The US predicts that the new law will enable people to take full advantage of the promise of personalised medicine without fear of discrimination based on their genetic information, and could also improve the climate for medical research. The UK observes the US legislative process with interest, as a similar debate about the appropriateness of genetic nondiscrimination legislation becomes increasingly apparent in this jurisdiction (see previous news).

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