ACLU of Massachusetts communications director Chris Ott wrote the following guest blog.
It might come as a surprise that we even need to, but the ACLU has sprung to the defense of people's rights to their own genes.
In one ongoing case, the ACLU represents plaintiffs including Lisbeth Ceriani, a mother and cancer survivor from Newton, in a challenge to patents on two human genes associated with breast and ovarian cancer. The suit charges that the patents on these genes stifle diagnostic testing and research that could lead to cures, and that they limit women's options regarding their medical care.
Ceriani found this out the hard way, when she learned that the firm granted a patent on the gene that could determine whether or not she should have her ovaries removed to avoid ovarian cancer charges more to perform the test than her insurance company is willing to pay. The ACLU position is simple: genes are a product of nature, and it's absurd to suggest that a corporation or any other entity should be able to own part of the genetic blueprint that helps make each of us who we are. As our lead attorney on the case likes to say, that's like suggesting a mining company should be able to hold a patent on gold that prevents anyone else from digging.
When it comes to DNA, we also fight for privacy rights, and that work made headlines again this week in Massachusetts, thanks to a lawsuit challenging the state's retention of DNA profiles that were provided as part of a criminal investigation. Cape resident Mark Amato voluntarily provided a DNA sample in 2002 as part of the investigation into the murder of fashion writer Christa Worthington. Authorities cleared Amato and convicted another man of the crime, so Amato simply wants to the state to destroy the genetic information it collected from his sample. A lower court dismissed his challenge, but the state Appeals Court ruled unanimously on August 25, 2011 that Amato's lawsuit can go forward.
The right to genetic privacy at stake here is important not only important to each of us as individuals. Our genes can reveal current and future health concerns about blood relatives, since close relations share much of the same genetic code. And in a time in which government agencies are compiling more and more data on ordinary Americans in the name of security, the significance of Amato's challenge goes beyond DNA, to the government's retention of records of any kind about ordinary, innocent people.
Like so many rights and liberties, privacy and control over something as basic as our own genes can't easily be gotten back--and that's why it's so critical that we not lose this control or casually give up fundamental rights.
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