Donated genetic data ‘privacy risk’


The BBC reports:

Researchers have identified people in the US who anonymously donated their DNA for use in medical research – raising concerns about privacy.

They could uncover a person’s identity using records of donated DNA coupled with other readily available sources of information on the internet.

It was made possible because of large “genetic genealogy” databases which help people trace their family tree.

The study was reported in the journal Science.

There is a strong link in men between their surname and unique markings on the male, or Y, chromosome.

These genetic markings are a useful tool when investigating a family tree as they are passed from father to son and are used in “genetic genealogy” databases.

Researchers from the Whitehead Institute for Biomedical Research used this freely available data to create a computer programme which could match unique markers to surnames.

This was used to hunt through an academic database – the 1,000 genomes project.

It contains the entire genetic code of volunteers who donated their DNA anonymously. The only record is of the donor’s age and their home state.

The computer programme, however, could now work out surnames as well. This was enough, combined with a basic internet search, to work out the identities of around 50 people.

One of the researchers, Yaniv Erlich, said: “This is an important result that points out the potential for breaches of privacy in genomics studies.”

The original Science article is “Identifying Personal Genomes by Surname Inference” Melissa Gymrek et al. (Science, January 18, 2012).

For more details, see these articles in New Scientist and Medical Express.