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Jul. 14 2009 - 10:47 am | 18 views | 2 recommendations | 4 comments

All your genes are belong to us

A Personal Matter - 23andMe

23andMe scores double pay day with your genetic data?

Thanks to advances in chromosomal technology, science types are unlocking many of the mysteries of our genetic makeup. In fact, some companies are even offering to test your genes and let you know if you have any problems. It’s almost as easy as taking your car to the shop for a diagnostic!

The companies offer consumers the ability to peer into their own genomes to trace ancestry and assess their future risk for diseases such as cancer, heart disease and multiple sclerosis. Consumers place their orders on the Web, then get a kit in the mail and return it with a cheek swab or spit sample for analysis.

via Online gene testers propose their own regulations – San Jose Mercury News.

Run a swab down the inside of your cheek. Send it to the lab. Find out you’ll be getting Alzheimer’s in 40 years. So nice. So easy.

Because the field is so new, there’s not a whole lotta regulation in place. The most famous of the commercial gene-testing bunch is 23andMe — it has the monetary backing of Google and its co-founder Anne Wojcicki is married to Google co-founder Sergey Brin. So much money, power, and brains in one couple, it’s a little scary.

Finding out what the future holds in store for you is great for customers. (I guess.) But 23andMe getting to compile a vast database of genetic material from its customers is a wee bit disturbing.

A few companies, like 23andMe, also are also using the tests to compile a vast database of genetic information of data that could be worth millions of dollars to outside researchers. Current projects sponsored by 23andMe include studies on a broad range of traits and behaviors, such as ancestral origins, pigmentation, optimism and handedness.

via Online gene testers propose their own regulations – San Jose Mercury News.

I love science. I love advances in science. So I like the what could be accomplished with this database.

But my “privacy implications detector” is going off. I checked out 23andMe’s privacy policy page and it makes all the usual promises about not disclosing your identity to third parties and separating your genetic information from any personal identifying information. Yet it also has this big warning on its Consent Form:

Genetic data you share with others could be used against your interests. You should be careful about sharing your genetic information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, the protection it will provide against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life or disability insurance providers. Some, but not all, states and other jurisdictions have laws that protect individuals from this kind of conduct. (For some examples of protective legislation and a description of the Genetic Information Nondiscrimination Act, click here.)

Genetic information that you choose to share with your doctor may become part of your medical record and through that route be accessible to health care providers and insurance companies in the future. Genetic information that you share with family, friends or employers may be used against your interests. Even if you share genetic information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned genetic information about health conditions and you do not disclose this to them, this may be considered to be fraud.

Yeah, that could kinda suck.

What disturbs me even more than the privacy implications is the company stockpiling samples of genetic material from paying customers. Those kits cost $399 a pop (though they’re on “special discount” at $99 through the end of September). Those genes belong to us! 23andMe warns in its Consent Form, which you must sign off on before participating:

23andMe may enter into partnerships with other investigators and organizations—non-profit and/or commercial—that conduct scientific research.

If companies are going to stockpile and sell the data, it seems like those who have paid to participate should get a cut of the profits. Or there should be two options: a $399-keep-my-info-out-of-your-study option and a free-use-my-results-however-you-want option.

But maybe a socialistic tendency just runs in my genes.


3 T/S Member Comments Called Out, 4 Total Comments
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  1. collapse expand

    I agree with your concerns about privacy and feel that we need some kind of national legislation to create standards about the use of information.

    Information, like water, will become in this century a great battlefield between public interest and private economic concerns. While the finance sector’s woes distract us into hand-wringing (and likely ineffective) regulatory attempts, information seems to skirt under the radar. Health care reform will only be efficient if private information is publicly managed in a way that helps reduce costs without robbing the citizen of his or her integrity as an individual.

    Information is an abundant “natural” resource of our time, and the private sector managers of information and data will be like the folks upriver who control the water. The problem in public oversight, however, is that in the USA (at least) individual freedom is not separable from economic power, and those who are in control of the new information resources are laying their groundwork well. (That’ the same problem facing campaign finance reform.)

    This isn’t meant to sound alarmist, just realistic. Shared information is the only way to effectively manage our economy and society. The challenge is preserving the values that make our “society” what it is (or at least what we hope it could be) while tapping the power of data.

  2. collapse expand

    This is as good an example as any you’ve written about the abuse of personal information. Even if a *tendency* is expressed in a gene, there are a whole bunch of other factors involved in how (and whether) those genes are expressed. There is an enormous potential for misuse here, when you have a population that sees a photo on MySpace and extrapolates the rest about an individual.

    OTOH, one could argue that the saliva left on a water glass in a restaurant allows *public* access to one’s DNA. But, the big picture ought to be the *expectation* of privacy and the presumed ownership of one’s personal information.

  3. collapse expand

    Kash -

    Thanks for the great post. Since this is a topic that I spend a fair amount of time with I thought I’d chime in with just a couple of additional comments:

    1. Regulatory Uncertainty

    As both you and 23andMe rightly point out, there’s a fair amount of legal and regulatory uncertainty around this new model of customer-driven research. On the one hand, it’s a potentially powerful paradigm for locating, for instance, disease-specific research populations that have long been too difficult or expensive for researchers to cultivate on their own. On the other hand, in addition to concerns about discrimination (some of which are covered by GINA but others of which, as 23andMe quite diligently points out, are not) there is real uncertainty about whether or how traditional human subject research protections (the so called “Common Rule”) will apply to commercial genetic research.

    I actually did a write-up of this very issue myself over on the Genomics Law Report (http://www.genomicslawreport.com/) just last week. The piece is available here: http://www.genomicslawreport.com/index.php/2009/07/09/genomic-research-goes-dtc/

    2. The Personal Genome Project

    There’s nothing wrong with your socialistic tendency (although whether or not it’s genetic is another story); in fact, there’s even a research project for you! If you’re not familiar with it already I suggest you check out the Personal Genome Project (http://www.personalgenomes.org/). Based out of Harvard Medical School it’s a non-profit research study designed to create a publicly accessible database of individual genomic data. The PGP, which is in the process of enrolling its next 100 participants and, thereafter, will move on to the PGP-1K stage, is sequencing the entire genomes of its participants and, because it’s a research project, there’s no cost (although donations are certainly encouraged). It’s not without its risks – which are all described in the informed consent documentation – but it certainly satisfies your free-use-my-results-how-you-want option.

    Full disclosure: I’ve been an ethical and legal consultant to the PGP for several years and PersonalGenomes.org (which is the organizing 501(c)(3) behind the PGP) is a client of my firm.

    Thanks again for the post and hope to see more on this topic soon.

    - Dan Vorhaus

  4. collapse expand

    Wow, Dan. Great article. I encourage others interested in these issues to check out this piece: http://www.genomicslawreport.com/index.php/2009/07/09/genomic-research-goes-dtc/, which more fully explores the repercussions of recruiting customers as research subjects.

    (It doesn’t explore my suggestion of profit-sharing with research subjects though, beyond the “knowledge profit.”)

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    I am a writer, reporter, editor and blogger. I'm an editor at Above The Law, where I blog about lawyers, judges, law firms and the legal industry. Here at True/Slant, I write about our changing notions of privacy.

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