Study highlights the privacy risk of donating your genome

| | January 18, 2013
This article or excerpt is included in the GLP’s daily curated selection of ideologically diverse news, opinion and analysis of biotechnology innovation.

If you contribute your genome sequence anonymously to a scientific study, that data might still be linked back to you, according to a study published today in the journal Science. The researchers behind the study found they could deanonymize genomic data using only publicly available Internet information and some clever detective work.

The study points to rising issues concerning genetic privacy and the need for better legal protection against genetic discrimination, experts say, since such a technique could reveal a person’s propensity to a particular disease. The work also shows that study participants need to be better educated about the risks of joining genetic research efforts.

While the Genetic Information Nondiscrimination Act of 2008 offers people some protection against employers or health insurers discriminating against them based on their genetics, life insurers and disability insurers are not prevented from using such information in their decisions.  

“We have no comprehensive genetic privacy law,” says Jeremy Gruber, a lawyer and president of the Council for Responsible Genetics. “People need to be much better informed of the lack of privacy protections we have for genetic information,” says Gruber. 

View the full article here: Study Highlights the Risk of Handing Over Your Genome

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