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Genetic Privacy

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Patient Data Posted Online in Major Breach of Privacy:

A medical privacy breach at Stanford University’s hospital in Palo Alto, Calif., led to the public posting of medical records for 20,000 emergency room patients, including names and diagnosis codes, on a commercial Web site for nearly a year, the hospital has confirmed.

Since discovering the breach last month, the hospital has been investigating how a detailed spreadsheet made its way from one of its vendors, a billing contractor identified as Multi-Specialty Collection Services, to a Web site called “Student of Fortune,” which allows students to solicit paid assistance with their school work. Gary Migdol, a spokesman for Stanford Hospital and Clinics, said the spreadsheet first appeared on the site on Sept. 9, 2010, as an attachment to a question about how to convert the data into a bar graph.

Even as government regulators strengthen oversight by requiring public reporting of breaches and imposing heavy fines, experts on medical security said the Stanford incident spotlights the persistent vulnerability posed by legions of outside contractors who gain access to private data.

Obviously this applies to the whole area of privacy in a digital world where innumerable copies of your information are floating around. I was having dinner with a friend when I offhandedly mentioned to him a website which allows you to look up information on people for free. He had his smartphone handy and was appalled that his birthday was posted for the whole world on the web (I assume that this has been “scraped” off a social networking site at some point). There are many instances of local governments scanning up information which is very private, and removing those files when that comes to light. But who knows how many people might still have those files? And that’s assuming stupidity or negligence. There are many underpaid individuals in firms which trade in private data who might think that a thumb drive with that data can be monetized.

This is why I’m rather casual about posting my genotype online. By the time this could be a major problem I think a lot of people will be in my boat, and as a society we’ll have to figure how to handle the radical transparency which our technologies will have unleashed. Perhaps a “Butlerian Jihad”? I wouldn’t bet on it…. I think the future is here to stay.

• Category: Science • Tags: Genetic Privacy, Personal Genomics 
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Randall Parker asks, Genetic Privacy And Identical Twins:

Suppose you have a right to genetic privacy. You might believe you do. Suppose you have an identical twin. Suppose the identical twin decides to publish his (or her) genetic sequence on the web. Do you have the right to stop this?

People who have identical genetic sequences each can get themselves sequenced and then release their genetic data for all the world to download and study. But when an identical twin does this another person also gets their genetic sequence released to the world.

So should twins be able to legally stop each other from publishing their shared DNA sequence on the web?

This is not a question that just applies to twins. As I noted earlier individuals share ~50% of their distinctive genetic material with their parents and full-siblings. I share ~12.5% with first cousins whom I have never met. If I just released my raw sequence by uploading it somewhere I would implicitly “expose” to a non-trivial degree dozens of people (many without their knowledge).

Of course all these issues were considered by the Genomes Unzipped gang. I think they’re right to judge the risks relatively low. Additionally, there’s nothing magical about genes. Family members can disclose all sorts of phenotypic information, in terms of disease, which would effect those whom they were related to. For example, imagine that an individual gets cancer, and decides to blog about their experience as a form of personal therapy. In theory*, perhaps insurance companies could data-mine the web for these weblogs, and then cross-reference with sites like Intelius and engage in “familial profiling,” assuming that the odds of cancer in the siblings of the blogger was higher than they had assumed prior. Could siblings sue the blogger to not make public their illness in a way that would make it easy for everyone to know of their possible likelihood of cancer? (to make this concrete, imagine we’re talking about breast cancer, and the woman is Jewish, so there’s a non-trivial chance of a BRCA mutation in her relatives) This seems absurd. To many the transparent society is a crazy idea on the face of it. But sometimes I think old ideas of “privacy” in an age of such free-flowing information really need to be revisited.

* In practice my understanding is that insurance companies engage in much coarser profiling, so there really isn’t much to worry about for 99% of people.

Razib Khan
About Razib Khan

"I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. If you want to know more, see the links at"