Donated genetic data ‘privacy risk’

Donated genetic data ‘privacy risk’

Genetic data was used to spot 50 people

Researchers have identified people within the US who anonymously donated their DNA to be used in medical research – raising concerns about privacy.

They could uncover a person’s identity using records of donated DNA coupled with other on hand sources of knowledge on the web.

It was made possible thanks to large “genetic genealogy” databases which help people trace their genealogy.

The study was reported inside the journal Science.

Weak male link

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

These genetic markings are a useful gizmo when investigating a genealogy as they’re passed from father to son and are utilized in “genetic genealogy” databases.

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

This was used to seek through an educational database – the 1,000 genomes project.

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

The computer programme, however, could now training session surnames to boot. This was enough, combined with a basic internet search, to see the identities of around 50 people.


One of the researchers, Yaniv Erlich, said: “Here’s a massive result that points out the opportunity of breaches of privacy in genomics studies.”

But he stressed very strongly that he doesn’t like to see public sharing of genetic information curtailed, rather that folk were aware about the realities.

“More knowledge empowers participants to weigh the hazards and benefits and make more informed decisions when considering whether to share their very own data.

“We also hope that this study will eventually bring about better security algorithms, better policy guidelines, and higher legislation to aid mitigate probably the most risks described.”

The team shared their findings with officials on the US National Human Genome Research Institute who then removed ages of participants from the publicly-accessible genome database.

In an accompanying editorial Eric Green, director of the Institute, says there ought to be a balance between the rights to privacy of these playing research and the advantages to society to be gained from the sharing of biomedical research data.

Hit rate

Frances Rawle, head of policy on the UK’s Medical Research Council, said: “This paper comes in handy and in addition timely as there’s currently a lot of discussion concerning the sharing of knowledge both between researchers and more widely.

“The possible benefits to be gained from sharing genetic data in terms of individuals have to be balanced with the aptitude harm of unintended disclosure of private information.”

Prof Mark Jobling, a Wellcome Trust senior fellow on the University of Leicester, said if an analogous study was done within the UK the hit rate may well be even higher because their have been less changing of surnames through the years.

He added that lots of effort was still required to spot individuals or even if someone had your genetic profile, most human traits don’t seem to be easily predictable from DNA.

“When people enroll to genetic testing, you’ll want to make it clear that that there’s an out of doors chance someone could identify you. It’s the very basis of informed consent.”