Over recent years many people have had their DNA analysed and results posted online. The results have been anonymised, but the vast spread of information on the web calls into doubt the possibility of really making information untraceable.
Last week the Boston Globe ran a story reporting an article published in the journal Science, in which researchers demonstrate how they correctly identified individual identities of the owners of some of this DNA.
Scientists at the Whitehead Institute for Biomedical Research wanted to identify the owners of anonymous DNA samples that are available for research purposes online. They did not have any high technology, using ancestor tracing websites and freely available public documents.
We are not talking about hackers or expensive programs, we are talking about people with every-day computers and the same understanding of how they work as you or I.
It took a single researcher with an Internet connection about three to seven hours per person, and all in all the identities of more than 50 participants were discovered.
This raises several issues. What about all of those people who gave materials for research who find themselves posted and traceable on the Internet? What obligations do commercial companies such as 23andMe have towards their customers, operating in a more or less unregulated environment? (see here for posts about their organization). Can there be real guarantees of anonymity in modern life? Given the obvious advantages of data gathering how can it better be shared in order to protect individual owners?
The very scientists who conducted the research argue that the privacy problem needs to be completely re-analysed, with some scientists dubious that privacy to any extent can be guaranteed.
Problems related to this are both practical and philosophical. In the US the GINA legislation was set up to protect individuals from the effects of their DNA codes (and analysis of it) falling into the ‘wrong hands’. The wrong hands in this case are those of health insurance companies, that might not want to insure a person (or may want to charge more) because they have one particular gene mutation or another.
There are shortcomings however, the GINA legislation does not allow health insurance companies to discriminate on the basis of DNA testing, but other insurance companies are not legislated against. Life insurance and long term care insurance is not covered under the document, so in theory they would be free to decline cover on the basis of DNA analysis. This is particularly important as long term care is extremely expensive and is not covered through health insurance.
Given that anyone who has given their DNA for research purposes risks being identified, they may also risk discrimination.