On April 5th, the Massachusetts Legislature's Joint Committee on Public Health held a hearing to consider the recently introduced "Genetic Bill of Rights" (Senate Bill 1080). At that hearing, I testified in favor of the bill along with representatives of the ACLU and the Forum for Genetic Equity. The Joint Committee displayed a strong concern for the issues presented and indicated a renewed commitment to moving this important piece of legislation forward. Indeed, other states are following the example. Vermont recently introduced its own "Genetic Bill of Rights" (HR 368) and declared April 25, 2011 as Genetic Equity Awareness Day. CRG is working in partnership with the Forum for Genetic Equity to advance the "Genetic Bill of Rights" (named after CRG's original "Genetic Bill of Rights" issued in 2000) in other states as well.
Why a "Genetic Bill of Rights"?
The Genetic Bill of Rights seeks to build upon the foundation of the recently enacted federal Genetic Information Nondiscrimination Act (GINA), an effort I led for fifteen years. GINA was successfully propelled by a legislative campaign that we began in the early 1990's to enact state protections against the misuse of genetic information in the areas of health insurance and employment. As more and more states began passing such laws, the prospects for federal legislation grew and GINA was enacted in 2008.
Beyond the protections of GINA, though, there is no comprehensive genetic privacy law in the U.S. Ten years after the mapping of the human genome was completed, the genetic revolution has led to a tsunami of DNA data created by genetics research and the commercialization of such research. And the commercialization of genetics is well underway. As more and more of this personal information becomes public knowledge, it can be bought and sold by any commercial interests interested in predictive information about an individual's future health status. Current law does nothing to prohibit discrimination in life insurance, disability insurance, long-term care insurance, mortgages, commercial transactions, or any of the other possible uses of genetic information. The public must be assured that undergoing genetic testing will not endanger their economic security.
The campaign to enact a Genetic Bill of Rights is an attempt to go back to state legislatures and address this significant gap in protections for the American public. The bill sets clear limitations on the use of personal genetic information in a variety of contexts unforeseen just a short time ago including protections against the use of genetic information in workers compensation claims and for marketing or determining credit worthiness. With the proliferation of genetic information, particularly in consumer contexts, this legislation sets strong standards on the disclosure of such data and ensures that genetic information and material are treated under state law in a manner similar to other medical records and creates a duty to report in the event of known security breaches or unauthorized use of personal information. Mistakes and other breaches of security are not uncommon. Just last year, the direct to consumer genetic testing company 23andMe accidentally sent data of up to 96 individuals to the wrong customers.
As genetic research and commercial genetics applications have proliferated, narrow ethical precepts governing human subject's research have coupled with little to no regulation of commercialized genetics. This toxic combination has ridden roughshod over the reasonable expectations and the appropriate rights of the people whose data and materials are implicated. Take the case of the Texas Department of State Health Services, which sent the genetic information of newborns to Texas A&M University for research without the parents consent. Some of those samples found themselves in an armed forces database.
Or consider the case of members of the Havasupai tribe, a small, isolated community who gave DNA samples to researchers from Arizona State University to contribute to research that could help determine the cause of the tribe's very high rate of diabetes. Nothing much came of the diabetes study, but over a decade later, the Havasupai discovered that over 20 academic articles had been published based on studies conducted at the university using Havasupai DNA, studying an array of topics the tribe members never agreed to. Many members expressed their shock at such a betrayal.
Such systematic violations of the expectations of people whose DNA, and personal health information is being used without their consent is just wrong. It's a violation of basic human rights. Moreover, as commercialization of genetics has exploded, individuals are being the denied the inherent monetary value of such information at the same time that personal genetic information is becoming widespread and our understanding of such data becomes richer and therefore increasingly valuable. The Genetic Bill of Rights represents a significant step forward in giving individuals back their autonomy by granting exclusive property rights to their own genetic information. Through property rights individuals will gain a series of rights regarding the control, possession and transferability of genetic information that are unavailable through privacy legislation alone; empowering individuals to have initial and on-going control over the use of their own genetic information. In turn, providing individuals with greater control over the use of their genetic information will, more practically, encourage otherwise reluctant individuals to participate in research by balancing their interests with the interests of those who seek to use such information for a variety of purposes.
For these reasons, we are working hard with our organizational partners to pass strong and comprehensive laws providing property and privacy rights for genetic information and genetic material. The Genetic Bill of Rights, if enacted, would confer upon Americans a significantly expanded set of rights than exist under current law and place the United States once again in its rightful role as a leader in addressing the social and ethical implications of new technologies and biotechnologies in particular.
Jeremy Gruber, JD, is President and Executive Director of the Council for Responsible Genetics.