john hawks weblog

paleoanthropology, genetics and evolution

privacy

  • Privacy of genetic research participants

    Thu, 2013-02-07 00:01 -- John Hawks

    Misha Angrist, writing in Nature News comments ("Genetic privacy needs a more nuanced approach") on the recent study that demonstrated the possibility of finding the true identities of research participants who provided anonymized DNA samples [1]. Adding some context to the study, Angrist discusses the current federal privacy regime, and the way that genetic research relies upon the anonymizing techniques now shown to be insecure:

    Although genetic data are considered protected health information under the HIPAA, many of the protections disappear when the information is ‘de-identified’ — that is, the 18 identifiers specified in the act (including names, addresses, birthdates and the like) are removed. And because genetic information is not one of those 18 identifiers, it does not need to be removed from health records to follow the letter of HIPAA privacy. If researchers do not know who you are, and cannot easily find out, then their obligations to you diminish by orders of magnitude. Furthermore, their protocols are less likely to need full review by an institutional review board; their grant applications become less onerous; and their technology costs go down.

    ...What if the absence of the 18 identifiers isn’t enough to protect someone’s identity?

    If genotyping becomes sufficiently cheap, and personal information sufficiently interlinked within corporate or government databases, then personal identification of genetic samples will be ubiquitous. The constraint on ubiquitous identification is not the cost of genotyping, which is already cheap enough for anyone motivated to identify a sample. The remaining constraint is the interlinking of databases.


    References

  • Genetics and privacy

    Tue, 2012-02-14 08:17 -- John Hawks

    "Harvard prof Henry Louis Gates Jr. hunting for great-great grandfather"

    CUMBERLAND, Md. -- Harvard University Professor Henry Louis "Skip" Gates Jr. is asking all residents of Allegany County, Maryland, who are of Irish descent to get their DNA tested to help solve a 150-year-old family mystery -- who is Gates’ great-great grandfather?

    I admire the way Henry Louis Gates has rolled with the punches as genealogical data from genetics have changed over the years. In 2006, I wrote in Slate about the limits of DNA ancestry testing, using Gates as an example of how tests before that time could mislead ("How African are you?"). He has made the complexity of interpreting these genealogy assessments into a successful series of television specials, and has probably done more to popularize DNA-assisted genealogy than anyone else in the United States.

    I thought of this story when Razib blogged today about "red tape" as a barrier to genetic testing for the purposes of health research ("American medicine & American red-tape").

    People are suffering from terminal illnesses, and considerations of the genetic privacy of their near relatives are looming large? Seriously? The reality is that manifestation of a disease itself gives one information about the risks of their relatives.

    The reality of genetics today: A Harvard professor is collecting the DNA of all Irish-descent males in Allegany County, Maryland, for the purposes of finding a man who lived in 1820. And many of them are willingly cooperating.

    "Privacy advocates" seem like they're living in the 1980's. Of course, when you end up dealing with Congress, the FDA, or other branches of government, living in the 80's is the expected norm.

  • The Church of personal genomics

    Fri, 2009-12-18 17:59 -- John Hawks

    I complained mightily about the problems I had getting George Church's essay ("The Genome Generation"). Church is the major organizer of the Personal Genome Project, and advocates the idea that individuals should release their genetic information to the public.

    In his essay, Church begins by pointing to the coming benefits of genetic research, refers to the need to support the "altruists" who provide their information openly for research, and ends by making a generic call for genome sharing:

    As "the first genomic generation" we will set the rules that many future generations may follow. Will we treat our genomes like our faces, which we share publicly even though they reveal details about our health, ancestry, and personality? Or will we be forced to hide them from view?

    Talk about a leading question! Will you remain hidden behind your genetic burka?

    I'll ask a different leading question: Is it generally a good idea to release your personal information to the internet?

    Naturally, it depends on the information. And how other people will use it. We know that credit card numbers can be used by bad people for nefarious purposes. Book purchases can be used by Amazon to market more books to you. And your recently played iTunes list can be used by major movie studios to determine whether you would be a good unpaid crowd marketer.

    Church's argument relies on two assumptions:

    1. Someone with your genetic information can't hurt you.

    2. You will benefit along with the rest of humanity from open genome sharing.

    Of course, assumption 2 is subject to the classic free rider problem -- why share when the collective benefits will come to you anyway? So that brings us back to assumption 1.

    Presently, there are few practical ways to hurt a person using her genome. Of course, that depends on the meaning of "hurt". Some people would be extremely embarrassed to reveal aspects of their ancestry, which is easily exposed with genome information. In fact, the second public genome (Watson's) was almost immediately subjected to ancestry testing. These testing results were publicized in an apparent attempt to discredit Watson's public statements on race.

    In the United States, it sadly quite common to investigate the ancestry of political candidates, and to use ancestry to discredit candidates' public statements. Without question, the world would be a better place if total openness would make people value diversity, as Church hopes. But I doubt that unilateral genomic openness will inspire such a sunny outcome.

  • Is your genome worth guarding?

    Wed, 2009-09-16 13:47 -- John Hawks

    Katrina Voss wrote in New Scientist a couple of weeks ago: "Your genome isn't that precious -- give it away". After discussing legislative efforts to provide remedies for genetic data security breaches, she writes:

    Yet much of our concern about the abuse of personal genetic data seems overblown. It betrays a fundamental delusion of self-importance: we assume that someone will find our individual genome interesting enough to hack into it and exploit it. In most cases, this would be a waste of time: our genetic secrets are rarely worth the cost of obtaining them clandestinely.

    The article touches on the Personal Genome Project's aim to release data unconditionally. In that context, complete openness can be cast as a selfless sacrifice:

    The PGP's open approach is pragmatic: society has much to gain from unrestricted access to genome sequences, medical histories and phenotypic data. For example, only by knowing how traits, experience and genes interact can we discover how both environmental factors and DNA affect disease. The prospect of such progress was a major factor in my family's decision to get involved. Whatever our fears about privacy, we have chosen to cast them aside for the greater cause. But no one who chooses to have their DNA tested should expect perfect anonymity - especially since DNA is the ultimate identifier.

    Hmmm....the ultimate identifier.

    I don't have anything against people choosing to make their data totally open -- I could imagine choosing to do so myself. I do think we should consider the rights of siblings, children, and parents, who after all share half each others' genomes.

    But I read another article that I think makes an interesting juxtaposition: "How much are you worth on the black market?"

    Ever wondered how much your online identity is worth to a cybercriminal? A new tool from Symantec Corp. will perform the calculation for you.

    The Norton Online Risk Calculator, unveiled within a microsite to coincide with the launch of Norton 2010, calculates your net worth on the black market by asking a few questions about your personal Internet use.

    It's a catchy intro for a story about data security -- later the miserable facts:

    Mistakes Internet users continue to make include forgetting to renew their security software subscriptions, not keeping operating system patches up to date and failing to use the latest version of their Internet browser, Merritt pointed out.

    Sure, a genome today is worth less than a credit card number on the black market. But suppose you knew somebody's DNA fingerprint, mtDNA sequence or other data used routinely in forensics. It would be trivial to synthesize fragments with the right lengths and primer sequences, use PCR to make a bunch of copies of them, and scatter them at a real crime scene.

    Well, that's the paranoid scenario, anyway!

    "Every four and a half minutes, a crime is committed on the streets of Los Angeles. Every three minutes, a crime is committed on the streets of Washington, D.C. In New York, a crime is committed every two minutes ... every three seconds, a crime is committed on the net," she said.

    For genetics, the question hinges on whether there will ever be a practical use for the data. I mean, when we talk about "identity theft", we think there's something worse going on than thieves walking into your house and taking down the genealogy chart.

    Blackmail is a use, but not very practical on a large scale. Now, if somebody could corrupt your data, say change a nucleotide or two, then they could spoof drug interaction risks and thereby damage your medical treatment courses. Still, that's not going to drive a huge underground of omecrackers.

    Of more relevance: What could somebody do if they knew the average genetic makeup of an organization, say by cracking a representative sample?

  • Personal Genome Project: waiting list now 13000 long

    Tue, 2009-05-19 08:48 -- John Hawks

    According to Computerworld magazine, 13,000 people have volunteered for the Personal Genome Project since it put out a request last month. Apparently, this has allowed the organizers to perform some triage:

    The project targets families that have had diseases or abnormalities since their data will be of more use in finding genetic links. According to Church, older volunteers get priority because they've had more life history and more medical incidents.

    You might ask, why Computerworld? Well, there is this:

    Eventually, Church said he envisions millions of volunteers participating in the Personal Genome Project, requiring a highly scalable infrastructure. For just the current database with data on 10 people, the project is using 100 servers and a three-node Isilon IQ 12000x cluster.

    The success of the project is highly dependent on how well the crowd-sourcing model works and which companies step forward to offer up technology for research. Church said Google has also offered "significant gifts," as has Amazon, which offered to host the data on its cloud storage offering.

    I'm not so interested in the medical history part, and much more interested in standard survey-type anthropometrics. I'm beginning to be apprehensive about the kind of computing power one will need just to work with the data. I'm glad I don't have to worry about hosting them.

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Malapa

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