Playing Fast and Loose with Genetic Information
posted by Danielle Citron
According to the New York Times, Google co-founder Sergey Brin, in a recent blog post, shared the news that he has a gene mutation that increases his likelihood of developing Parkinson’s disease. According to Brin, studies show that his likelihood of developing the disease “in his lifetime may be 20% to 80%.”
What would possess Brin to disclose this sensitive personal information? The simple answer may lie in a crass attempt at advertising for his wife’s company, 23andMe, a biotechnology start-up that maps DNA for customers. In his blog post, Brin reported that 23andMe identified his gene mutation, a discovery that will allow him to “adjust his life to reduce” his chance of developing Parkinson’s and “support research into this disease” long before it affects him. (At a party, Brin told a New York Times reporter that he thought disclosing one’s DNA code to the public would be helpful to attract input from doctors who could suggest treatments, in a sort of open-source model). But for anyone else–a mere mortal who does not have the luxury of his wealth–such a disclosure would be foolish. Employers would no doubt view a person differently, even though the increased chance of developing the disease based on the gene mutation is so uncertain. His disclosure also sends the wrong signal to the easily influenced–one hopes that we do not see people announcing their potential diseases on Facebook or MySpace.
September 23, 2008 at 7:22 pm
Posted in: Privacy (Medical)
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Responses (11)
amused - September 23, 2008 at 7:26 pm
Why?
Frank - September 23, 2008 at 8:52 pm
To “Amused”–most people don’t have the $10 billion in the bank that Brin has. If he loses health insurance, he can buy a hospital. If they lose health insurance, they may well be denied lifesaving care, as 18,000 americans were last year.
You don’t think MySpace posts will be used in this way? I’m sure the many people now being denied health insurance on the basis of their pharmacy purchases didn’t think their CVS receipts would end up used against them, either:
http://www.concurringopinions.com/archives/2008/07/one_more_triump.html
md - September 23, 2008 at 11:15 pm
note that one does not “contract” Parkinson’s. You might develop it later in life, but you contract contagious diseases, not a genetically-based condition.
Logical Extremes - September 24, 2008 at 1:20 am
The other motivation that occurred to me is that maybe Sergey sees this an opportunity to model personal transparency. Google would not be well served by a privacy backlash, and the more it can do to get people to be OK with sharing their personal information, the better off it will be in the long run. DNA may be an extreme example, but ads can be more targeted, and more profitable, when more is known about the targets.
But, yes, this level of sharing in our society is not appropriate for most mere mortals.
Danielle Citron - September 24, 2008 at 4:19 am
Thank you for your terrific comments. Frank has captured my concerns astutely: no matter how small or uncertain the possibility that a gene mutation would lead to disease, employers, potential romantic partners, and even friends may believe that the person is more vulnerable than others, at the least, and may discriminate against the person, at worst. This concern is precisely what is animating legislators who develop laws that prohibit employers from discriminating on the basis of genetic information. Karen Rothenberg, Diane Hoffmann, and Debbie Hellman have written important pieces on this point as have many other distinguished scholars.
Serious thanks to Logical Extremes for the superb point about Brin’s ultimate agenda: the more we accept personal transparency, the more we tolerate all sorts of privacy intrustions, including that of Google. Superb point.
And thanks to md–I fixed contracting to developing in the post.
JP - September 24, 2008 at 11:59 am
How is this different from a celebrity disclosing cancer or HIV status or some other condition to “raise awareness?” I thought the idea was that these disclosures helped reduce the stigma attached to such conditions. Why won’t Brin’s disclosure do the same for genetic mutations (and ultimately leading to less discrimination and increased support for more legislation like GINA)?
Danielle Citron - September 24, 2008 at 12:24 pm
JP,
That is a terrific point. Indeed, we all no doubt have genetic markers for disease and if everyone knew each other’s information, then the sting (employer discrimination, etc.) would likely disappear. Thus, we would have all of the upside of disclosure–public awareness of certain diseases–without the disadvantages. Perhaps that scenario is optimal and hence truly forward-thinking. But the worry remains given our current norm of secrecy about this information due to the risk of bias that disclosure at present runs serious risks that should be considered.
Thanks so much,
Danielle
amused - September 25, 2008 at 2:47 am
Someone please tell Pasquale that “inequality” is not an answer to every question in the world. Frank, I’ll repeat the issue slowly.
Brin *chose* to disclose information about his condition. Nobody asked him to do so. His disclosure is not unusual. A lot of people routinely disclose sensitive or embarrassing information about themselves — think of all the self-reporting on marital infidelity, childhood abuse, wacky sexual desires, drunken sprees, venereal diseases, cheating at school, stealing from employers, getting abortions, committing violent crimes, etc. that fill our airwaves, our bookstores, and the Internet. You may think it’s unwise to tell the world that your husband isn’t really the father of your child or that you are routinely overbilling your clients, but lots of people obviously think otherwise.
Danielle said she hopes people don’t start placing genetics-related info on the web — but why? Is it because the info is about a person’s genetic makeup (but so are disclosures of the true daddy or adoption status)? Is it because that info has to do with health (but so do drunker sprees, drug use, and eating disorders which are disclosed routinely)? Is it because the info is tacky (lots of things are)? Or perhaps Danielle wishes that all of the above topics were removed from the public eye? Or only removed from the Internet? Is it ok to disclose one’s genetic predisposition to disease in a public lecture or during a TV interview?
I can’t tell what her problem is, so I asked.
amused - September 25, 2008 at 2:49 am
Someone please tell Pasquale that “inequality” is not an answer to every question in the world. Frank, I’ll repeat the issue slowly.
Brin *chose* to disclose information about his condition. Nobody asked him to do so. His disclosure is not unusual. A lot of people routinely disclose sensitive or embarrassing information about themselves — think of all the self-reporting on marital infidelity, childhood abuse, wacky sexual desires, drunken sprees, venereal diseases, cheating at school, stealing from employers, getting abortions, committing violent crimes, etc. that fill our airwaves, our bookstores, and the Internet. You may think it’s unwise to tell the world that your husband isn’t really the father of your child or that you are routinely overbilling your clients, but lots of people obviously think otherwise.
Danielle said she hopes people don’t start placing disease-related info on the web — but why? Is it because the info has to do with genetic makeup (but so are disclosures of the true daddy or adoption status)? Is it because that info has to do with health (but so do drunker sprees, drug use, and eating disorders which are disclosed routinely)? Is it because the info is tacky (lots of things are)? Or perhaps Danielle wishes that all of the above topics were removed from the public eye? Or only removed from the Internet? Is it ok to disclose one’s genetic predisposition to disease in a public lecture or during a TV interview?
I can’t tell what her problem is, so I asked.
Frank - September 25, 2008 at 5:57 pm
amused–i was there making a point about absolute, not relative, deprivation. If you’ve got a plan to assure that private insurers don’t discriminate against disease-disclosers, let’s hear it!
Logical Extremes - September 26, 2008 at 6:53 pm
A problem with any trend toward disclosure is that detection of discrimination will be extremely difficult, and as for enforcement, the harms will already have been done.
People have inherent rights to privacy. People also have rights to disclose if they wish. There’s no point in forcing either position, just protect those who make either choice.
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