In UK legal terms, my DNA sequence is sensitive personal data, and the data subjects are not only me, but also my relatives. Consent from me alone shouldn't give you the right to publish it. What is more, it can't be anonymised. Like a fingerprint, it can always lead back to me. Unlike a fingerprint, you don't necessarily need government resources to make the link, as this recent paper in Science proved:
Title: Identifying Personal Genomes by Surname Inference Science, Vol. 339, No. 6117. (18 January 2013), pp. 321-324, doi:10.1126/science.1229566 Key: citeulike:11901986
Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.
From: Gareth Knight <[log in to unmask]>
Subject: Re: Risks of de-anonymizing data
As a side-note, a recent NY Times article on use of DNA sequences (http://www.nytimes.com/2013/01/18/health/search-of-dna-sequences-reveals-full-identities.html) highlights the potential for identifying larger groups of people, including family members who were not part of the study. I'm not sure of the legal implications, but it would be useful to mention as a topic for discussion.
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>>> James Wilson <[log in to unmask]> 11/02/2013 14:37 >>>
Here at the Damaro Project we've started fretting about the increased risk of anonymized medical (& social sciences) data being de-anonymized as more and more datasets become available and the opportunities for cross-searching increase. We'll be preparing some RDM training for medical researchers shortly, and it would be good if we knew a bit more about the issues involved. Is this even something worth worrying about (I'm not very familiar with medical data)? Could any of you point us in the direction of any advice?
Dr. James A. J. Wilson,
Project Manager, DaMaRO Project