By Steve May

Massachusetts statehouseIn the lead up to the passage of a GINA, the Genetic Information Non- Discrimination Act in 2008, several states passed their own statutes addressing genetic bias in employment and health insurance. This process was greatly helped by the leadership of organizations like the Council for Responsible Genetics and the role it played in forming the Coalition for Genetic Fairness. Through the work CRG and the coalition mounted, the Massachusetts Legislature passed what was at the time landmark civil rights legislation in 2000.

A decade removed from that victory, the pace of innovation and the lag among public policy officials compels us to return to Beacon Hill in an effort to lock in and affirm these earlier successes. As such, the Forum on Genetic Equity was formed as a way to engage in advocacy in furtherance of a proconsumer vision which affirms the right of individuals to control of their genetic information and material while working to end all forms of discrimination based on one's own genetic profile.

Without question the science has sped past policy and opinion leaders. In the decade since Massachusetts completed its Genetic Privacy bill, we have seen the complete mapping of the Human Genome. Changes in technology have made DNA testing relatively inexpensive, and a renewed emphasis on digitizing medical records means transfer of the information is only a mouse click away. Controversies never considered plausible a decade ago are now taking center stage in courtrooms and the court of public opinion.

In response to these emerging trends we have set forth in an effort to give voice to the concerns of ordinary citizens. These facts have compelled us to introduce a bill in the new legislative session on Beacon Hill, called the Massachusetts Genetic Bill of Rights.

Key elements of our legislative package include:

Defining genetic information and material as personal property

While it may be obvious that material harvested from an individual should be subject to their expressed wishes with respect to its use, in fact this is an unsettled question of law in many quarters. By expressly stating that an individual may assert dominion over genetic information and material, it allows individuals to make reasonable provisions for this same material's maintenance, inheritance and divisibility, should the need ever arise.

Prohibiting the use of genetic information and material in establishing credit-worthiness

The same financial regulations which led to the mortgage mess, Gramm-Leach-Bliley, named a whole series of financial institutions as authorized users of an individual's personal health information. These include: banks, mortgage companies, credit unions, holdings firms, and investment houses, among many others. Our proposed measure expressly prohibits these financial institutions from using genetic information and material in setting loan rates as part of their lending practices.

Ending discrimination in accessing life insurance coverages

Currently, life insurers can stop an individual from purchasing a policy based on their genetic make-up. That is to say, a person who is a carrier for a genetic condition which may not physically present for more than half a century could be barred from accessing coverage based on the likelihood that this condition will eventually present. Denying an individual the opportunity to purchase life insurance is discriminatory. Insurance policies are public accommodations just like a mortgage. Also, life insurance policies are sold across state lines, and as such they are subject to the commerce clause. The Massachusetts bill recognizes that everyone is entitled to contract for services based on their own unique life circumstances.

Preventing the use of genetic information in insurance underwriting

GINA stopped health insurers from using genetic information and material in rendering and withdrawing medical care. This proposal builds on GINA's earlier success by extending this principle to other insurance products like life, auto, disability and long-term care.

Defining the misappropriation of genetic information and material as a form of identity theft

Nothing is more integral to the essence of one's self than our genetic make-up. This provision recognizes that our genetic information and material should, as a matter of law, be on an equal footing with information like our social security number under Massachusetts law.

Criminalize data trafficking and genetic profiling

The proposal we are forwarding allows researchers to continue important research by guaranteeing a pathway to innovation and access to anonymized patient histories. Since the mapping of the Human Genome these histories have been the subject of efforts to reattach individual demographic information, which can then be sold, licensed and transferred. Once this information has been clawed back, drug manufacturers have been purchasing this information for use as part of their routine marketing efforts. Increasingly this information is being used by banks and insurers to inform their on-going business operations. Our effort prohibits a MA company from engaging in these practices and creates an avenue for legal action should these actors target people in MA.

Recognize people with a genetic marker as a class of persons under the Massachusetts Civil Rights Act

Not unlike people with HIV or AIDS, the Genetic Bill of Rights recognizes that people with a genetic predisposition need to be protected in access to public accommodations; housing, and workers compensation.

Obligating any entity which uses genetic material as an element in a good or service to abide by the CLIA standards

We believe the increase in the number and scope of commercial entities which are using genetic information or material, as a significant element in the sale or license of a product, good or service calls out for the regulation of providers of direct to consumer genetic products. Any entity which handles genetic material as part of its routine business operation should be subject to the FDA's clinical laboratory guidelines. As more and more products promise to be able to distill one's family history from a DNA swab, or creates a piece of art based on a mapping of one's genetic material; it will be increasingly necessary to increase regulatory oversight to assure that these ventures are not seeking to circumvent the law in order to traffic in genetic profiles.

A decade ago, when Massachusetts and other states were advocating for a Genetic Privacy bill, CRG was intimately involved in the bill's creation and eventual passage. Work by organizations like CRG at the state level paid big dividends in the lead up to Federal action. Ultimately bills passed at the state level paved the way for GINA's eventual passage. Working again in state houses around the country could provide critical momentum towards some future action.

The Massachusetts effort is a critical first step towards launching a national conversation about genetic information and genetic material. The 2000 Massachusetts bill created a place to start from with regard to a framework for deepening and broadening individual privacy rights while safeguarding genetic information and materials. Our initiative is bigger than a single state. If we are to create the changes necessary to create a new consensus around these emerging human rights concerns we will need to engage wherever and whenever opportunity presents itself. We believe that the public is prepared to enter a national conversation about these concerns and the Forum is prepared to facilitate that engagement through on-going efforts around the country.

For more information about the Forum on Genetic Equity please view its website: Steve May is Executive Director of the Forum on Genetic Equity.

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The purpose of the Genetic Bill of Rights is to introduce a global dialogue on the fundamental values that have been put at risk by new applications of genetics.
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