Genetic Bill of Rights: Teetering on the brink of Massachusetts law?

Posted by Doug Pet March 31, 2011
Biopolitical Times
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The Forum on Genetic Equity (FGE) is leading a campaign in support of Senate bill 1080, "The Massachusetts Genetic Bill of Rights" [pdf]. The Massachusetts legislature will deliberate next week on the bill, which, among other things [pdf], recognizes the individual's right to privacy with respect to their genetic information, and makes it illegal for life, auto and disability insurers to deny coverage based on genetic markers.

FGE executive director Steve May aims to galvanize a wide range of public interest voices in promoting the bill. He and other advocates rightfully expect a lawyer-toting mix of corporations, insurance companies, lenders, and various players from what May calls "the Life Science industry" to come out against the bill. If passed, it could have serious impacts on how genetic information can be obtained, transferred, licensed, and sold.

FGE is circulating an open letter [pdf attached below] to the Massachusetts Joint Commission on Public Health, which the Center for Genetics and Society has signed. The letter highlights three main areas that the bill addresses:

  1. overseeing the transmission of genetic material and information to protect health autonomy and privacy,
  2. regulating to ensure appropriate uses of "genetic goods, products and services,"
  3. guaranteeing that no one is denied "public accommodation," long-term care, private insurance, or monetary loans based on their genetic profile.

The letter also alludes to the important argument that such information must be protected because genes represent a "common heritage" shared by all people.

It is our belief that all residents of the Commonwealth are entitled to enjoy a right to privacy inherent under the color of law with respect to one's own genetic privacy. Further, we believe that one's genetic makeup represents a unique expression one's individual personhood; and an individuals' genetic information and material are the product of the individual whom they are yielded from, and as such should be treated in accordance with provisions of the Massachusetts Civil and Criminal codes.

The Massachusetts Genetic Bill of Rights would be an important step toward protecting this common heritage and, as my colleague Pete Shanks wrote in an earlier post on Biopolitical Times,

may provide a framework for Federal legislation, or a stimulus for discussing and developing such laws. At a minimum, it will advance the dialog.

Furthermore, the passage of the bill would set an important precedent that affirms the urgent need for policies that protect genetic rights in order to ensure civil liberty, social justice and the common good.

Previously on Biopolitical Times: