By Audrey Quinn
Posting in Science
California's proposed Genetic Information Privacy Act would require written consent for scientific use of your DNA. But scientists argue that it would significantly hinder research.
A new bill under consideration by the the California Senate Appropriations Committee proposes to define your genetic data as personal property, Scientific American reports.
The Genetic Information Nondiscrimination Act (GINA) passed by the U.S. Congress in 2008 already states that your genetic information can't influence your health insurance or your employment.
But as anyone who's seen Gattaca can attest, people have bigger picture concerns about others' access to their DNA.
"It's becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information," California state Senator Alex Padilla, the California bill's author, told Scientific American. "It's such sensitive and personal information that it ought to be protected."
Under the newly proposed bill, a person's genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled.
Under GINA, your DNA can be used "For anonymous research where the identity of the subject will not be released," without your informed consent.
Why could this be concerning? GINA critic Tera Eerkes, founder of the now-defunct personal genetic testing company Qtrait, told Wired's Brandon Keim:
Once [your genetic information] is distributed to other groups, it’s difficult for me to see how that information can be fully protected. We all know that laptops full of important private information are frequently lost and misplaced, humans make mistakes. Your DNA is a unique fingerprint of you, so your identity can never fully be protected once your DNA is public. In addition, your DNA can potentially tell people something about your children and your close relatives.
GINA does not protect you from having your genetic information used to discriminate against you when you apply for life insurance, long term care, or disability insurance.
The California bill would require researchers to obtain the signed consent of every person whose genetic information is part of their DNA bank, for each new study they undertake. And that's worrying researchers.
The University of California estimates the measure would cost them $594,000 more a year in administrative costs, and has expressed concern that it would hinder their researchers from receiving competitive research grants.
Geneticist David Segal, associate director of genomics at the University of California, Davis [...] points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases. Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorizations—an infeasible task, he says.
State legislatures in South Dakota, Alabama, Massachusetts, and Vermont have also proposed bills defining genetic data as personal over the last year. The California Senate Appropriations Committee must decide by 25 May whether the costs of their bill overwhelms its ethical worth. Then the bill would come under a vote in the state senate, after which it must pass through the Assembly. If ultimately signed into law by governor Jerry Brown, it will be the first of its kind enacted in the U.S.
Photo: Col Ford and Natasha de Vere/Flickr
May 21, 2012
Many courts require that a DNA sample be surrendered upon conviction. If a pardon is granted, does this mean the DNA sample is destroyed?
Mix a little of this and that of other DNA into whatever your or my DNA sample might be and magically call it their own creation and slap a patent on it... so I'm not certain that it will do much good to try and protect ownership of anyone or anything's DNA... we are living in a science fiction Frankenstein monster's laboratory when it comes to what corporation will do to advance their bottom lines... so stealing part of someone's DNA code and calling it their own will certainly jiggle them right around any major legal landmines in that territory I'm afraid
Anyone want a DNA sample from me can sign a purchase and royalty agreement. They can buy a sample and I get 10 percent of the profits from anything developed from my DNA.
I'm not an American but where are some thoughts on it. So may we consider a human body as biohardware + biosoftware? And do not let hardware specialists break into my soft, copy or disassemble it without my own permission.:) To say seriously, DNA is personal data and must be processed this way or even more secure.
Be careful, you noble and legitimate researchers, for any "help" you may receive from new laws and regulations -- especially in order to save money and research time against competitors -- is not designed to make your work easier; on the contrary it is designed to provide the controlling corporations with greater ability to use you and your work for purposes of war, profits, and human enslavement. Leave well enough alone. People donate their DNA all the time. There is plenty to go around. That fact alone is proof that this issue is a ruse. Do not mess with individual people's ownership of their own bodies, and beware sweeping legislation. Open your eyes and see that we are at this time under complete Orwellian control. Your ownership of your own ideas is at issue now.
What's in your genes and DNA should be only your business, not your employers or anyone else. Though G.I.N.A. addresses and prohibits discrimination by employers and insurers, other issues remain unaddressed. Some are discussed in our blog. http://rongeri.wordpress.com/2012/04/01/whats-in-my-genes-and-jeans-is-my-business-not-yours/
Somewhat sloppy writing. In almost all instance when the author uses "DNA" they really mean "DNA sequence". No bona fide research project is ever going to destroy the sequence data because essentially a genetic research project is never finished. "The California bill would require researchers to obtain the signed consent of every person whose genetic information is part of their DNA bank, for each new study they undertake. And that???s worrying researchers." I don't quite understand this statement as I am pretty sure that rule already applies and has for decades. Any genetic research project has always required obtaining informed consent from donors and the use of the material is explicitly spelled out. True, as I wrote above, a specific research project essentially never ends and so the same consent is often used for new projects that grew out of the original. For example, often collaboration with another lab doing something similar with either a different hypothesis or simply to combine projects (ie. data) for greater (statistical) power.
This is easy. If you own your own organs then it is logical that you also own your DNA and other components of and from your body. If someone wants to have a part from you would you give them your heart (while you are alive), your lungs or both kidneys would you give it to them? For organ donors there is a process with a lot of legal mumbo jumbo. I believe the law should be made to define the body of a person with all the accompanying parts to include DNA are yours to keep. If you choose to sell parts for research or to help someone else live then a legally binding contract be made defining the use and limits to the use of your parts.
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You are confused. All the thousands of genetic research projects involving tens of thousands of samples (DNA) around the world in public research labs were obtained by willing people donating their DNA (usually via blood, sometimes by the inferior mouth swab) in a process similar to blood donation. Except that in the US blood donors can be paid while DNA donors to research projects are hardly ever paid and in many jurisdictions payment is outlawed. Of course a lot of the donors are people with a direct interest in the research usually due to suffering a genetic disease (or part of a family with ditto) etc. And just like blood donors do not expect some kind of compensation later when their blood might be used to save someone's life, discoveries made from analysis of someone's DNA (sequence) which may eventually lead to some commercialized product or process (not by the researchers), the original donors do not share in that profit. On the other hand it does make a case that the genes so identified (for a particular disease, say like BRCA1 & 2 for breast cancer) should not be patentable as has happened. Which is not to say that some true invention (a treatment, drug or even a specific method of diagnosis) based on that gene cannot be patented; it can and does not stop other researchers or companies from looking for their own angle etc. That is, no one owns the genes (or should, Myriad Genetics "owns" BRCA1 & 2 and most scientists think it an outrage). Researchers do not betray the trust. But the problem now is that more extensive DNA sequence (and increasingly complete genome sequence) by itself (without any accompanying identifiers) is THE identifier. It is practically impossible to put this genie back in the bottle and instead the abuse of the information is what needs to be legislated.