An article recently published on PLOS Genetics showing that (and how) individuals can be identified by their DNA within large publicly accessible pools DNA has led to genetic data being removed from publicly accessible websites by the NIH and the Wellcome Trust. As one geneticist quoted in Science put it “We have a false sense of security with pooled data.”
Whatever our sense of the security is, it seems always to have been possible to dig out individual information given the appropriate circumstances. Consider the following analogy: If I know that there is a particular combination of words in a book, it is only a matter of time before I find that combination. Moreover if I wish to find out whether there is a particular combination of words in a book it is, similarly, only a matter of time before I find out whether that combination actually appears in that book. The longer the book the longer it will take. If someone comes up with a way of searching the book using a computer program it will take less time.
If I have access to the relevant equipment, I have a person’s DNA and, crucially, I know that it is that person’s DNA, I am already in a strong position to find out a good deal about the person in question. Indeed, just with this information alone I could find out potentially more damaging things than being able to determine whether or not they are part of a particular DNA pool. If I am prepared to go to such lengths to find damaging information about a person there are certainly more convenient and sure-fire ways than this.
This study does seem to make the possibility of finding individuals explicit as well easier. The question then concerns the harms involved and the risk than these harms will be realised. As in many cases of research it is important to balance the risks of harm against the benefits that the research is likely to bring. What we do need is an account of what the actual risks are — that is, of an individual’s sensitive information falling into the hands of those who would harm them (rather than researchers) — and of the benefits that public access to DNA pools brings. All this needs to be separated from over-sensitivity to genetic security and privacy violations.
See also: http://www.nature.com/news/2008/080904/full/news.2008.1083.html
What are the benefits to research of knowing that “it is that person’s DNA”. Surely the information could be properly anonymised? Even if I want to associate phenotypic charactersitics to a DNA, why be nominal about it?
Tony
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