Action Needed On Genetic Privacy Pact
We have entered the age of personalized medicine. Increasingly, Americans will go to the doctor and find that they are being asked for a DNA sample. Drug manufacturers are creating drugs and therapies that are specific to one’s genetic profile. More of these genome-specific products are finishing clinical trials and will start to enter the marketplace over the next several months.
Massachusetts is a global leader in the life sciences. Many of these new products have ties to our state. The people of this commonwealth should take pride in knowing that the labs, researchers and facilities making these advances possible call the Bay State home. By the same measure, we cannot assume that Massachusetts will hold this place of honor in the global marketplace.
Safety First
The products created here in Massachusetts represent a radical departure from the treatments and therapies with which most of us are familiar. Public confidence in the safety of not just the products, but also the process by which genetic testing occurs and genetic material is collected and held, is critical to the future success of genome-specific products and therapies.
Consumer confidence is essential to the future growth of the life sciences industry. As these new treatments become more readily available, the public will demand increased transparency.
Massachusetts, as a pioneer in the life sciences sector, has more to lose if the public calls into question genetic treatments and individualized therapies. Proactive steps are necessary to reassure the public. The Forum on Genetic Equity has stepped forward with a Genetic Bill of Rights, which has been introduced on Beacon Hill. The future success of the life sciences in Massachusetts depends not only on safeguarding the privacy rights of individuals, but also on the public feeling secure in the belief that all necessary steps have been taken to maintain individual safety and well-being.
The life sciences industry is a cornerstone of the Massachusetts economy. Massachusetts does not have the luxury of waiting for the U.S. Congress to reach a consensus on genetic privacy — our economy is too important to be subject to the whims of D.C. gridlock.
State legislators must step forward and act for the good of Massachusetts. The Genetic Information Nondiscrimination Act (GINA), the first genetic privacy bill in American history, was passed by Congress in 2008. Limited only to health insurance and employment law, it was passed 18 years after its initial introduction. In the interceding years, several states including Massachusetts passed genetic non-discrimination bills addressing many of the principles ultimately incorporated into the national bill.
We do not have the luxury of waiting another generation to act as the pace of technological change speeds ahead. Critical action is needed now.
Steve May is the executive director of the Forum on Genetic Equity. For more information, visit www.geneticequity.org.
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