The secrets contained in our individual genomes are less valuable than we like to believe
IMAGINE donating your DNA to a project aimed at discovering links between genes and diseases. You consent to your genome sequence being released anonymously into the public domain, though you are warned there is a remote possibility that it might one day be possible to link it back to you.
A few years later, that remote possibility comes to pass. How should you feel? This is no longer a hypothetical scenario. About 50 people who participated in a project called 1000 Genomes have been traced (see "Matching names to genes: the end of genetic privacy?").
The researchers' intentions were honourable. They have not revealed these identities, and the original data has been adjusted to make a repeat using the same technique impossible. All they wanted to do was expose privacy issues.
Consider them exposed. It is clear that genomics has entered a new phase, similar to that which social media went through a few years ago, when concerns were raised about people giving away too much personal information.
What happens when the same applies to our DNA? Having your genome open to public scrutiny obviously raises privacy issues. Employers and insurers may be interested. Embarrassing family secrets may be exposed.
But overall, personal genetic information is probably no more revealing than other sorts. In fact there are reasons to believe that it is less so: would an insurance company really go to the trouble of decoding a genome to discover a slightly elevated risk of cancer or Alzheimer's disease?
The available evidence suggests not. In 2006, Harvard University set out to sequence the genomes of 100,000 volunteers and make them publicly available, along with personal information such as names and medical records. One of the goals was to see what happens when such data is open to all. The answer seems to be "not a lot". So far this Personal Genome Project has published 148 people's full genomes. Not one volunteer has reported a privacy issue.
This is not a reason for complacency, but it suggests that our genomic secrets are less interesting to other people than we might like to believe.
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DNA privacy: don't flatter yourself
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DNA privacy: don't flatter yourself
