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.