President Bush this week signed into law the Genetic Information Nondiscrimination Act (GINA) which is the "first and only" legislative effort at the federal level that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings. The legislation passed 95-0 in the Senate and 420-3 in the House. Ok – who were the 3 naysayers? Reps. Flake, Paul and Royce. It was first written about here in a posting in March, 2007 called Pharmacogenomics, Personalized Medicine and the Future.
According to the Coalition for Genetic Fairness, the legislation will offer protection by:
- Prohibiting group health insurance plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of an individual’s genetic information. Insurance companies cannot request, require or purchase the results of genetic tests and they are prohibited from disclosing personal genetic information;
- Prohibiting issues of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests or disclose genetic information;
- Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information. Similar provisions apply to employment agencies and labor organizations.
One of the reasons that this development is important is not only that it encourages participation in research projects by individuals, but it is one of the many policy initiatives needed to support the advancement of personalized medicine and pharmacogenomics, as raised in a February 2008 posting – Is Pharmacogenomics a Realistic Possibility? that discussed the excellent policy paper published by the National Center for Health Policy – Pharmacogenomics – A Primer for Policymakers.
It’s nice to know Congress can do the right thing.