The Genetic Information Non-Discrimination Act (GINA) that was signed into law nearly three years ago was groundbreaking, but limited. CGS described it at the time as a "good first step" and many others agreed. The final regulations, issued in November 2010, were helpful but necessarily limited. But there are signs that further progress may be on the way.
The next steps may be on a state-by-state basis, with Massachusetts taking the lead. The Forum on Genetic Equity has crafted a Massachusetts Genetic Bill of Rights [pdf], which is co-sponsored by Senator Harriett Chandler and Representative Ellen Story, and supported by at least 17 other state legislators. Key points include that the Bill establishes:
- a right to privacy with respect to genetic information and material
- that genetic information and material are personal property
- that health care facilities cannot deny treatment & wellness services solely based on the discovery of a genetic marker
- that genetic information and material may not be used in conveyance of life, long-term care and disability insurance
- that auto insurers cannot use genetic information in establishing policies and rates
The Bill includes other protections, making identity theft stemming from misappropriation of genetic data a criminal offense, for example, and forbidding bankers from using genetic profiles. (The concern is that they might, say, refuse mortgages to people they considered at risk of heart attack.) There is a good discussion of its implications at Genomics Law Report, and at GenomeWeb's Pharmacogenomics Reporter, and more background at the Forum's FAQ page.
This is not the only state-level legislative effort. There is a much more limited New York Bill to force insurers to pay for breast cancer tests, though that seems unlikely to pass.
Clearly, genetic protections should be national in order to avoid a messy patchwork of disparate state laws. The Massachusetts initiative, which is still a long way from becoming law, may provide a framework for Federal legislation, or a stimulus for discussing and developing such laws. At a minimum, it will advance the dialog. And that is certainly a good thing.
Previously on Biopolitical Times:
Posted in Human Rights, Personal genomics, Pete Shanks's Blog Posts, The States, US Federal
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