Your DNA is some of the most intimate information out there — encoded in it is information about your health, your personality, your family history. It isn’t hard to imagine how such sensitive details could be damaging should they fall into the wrong hands. And yet, the privacy practices of the people and programs handling that information isn’t exactly up to snuff.
Researchers at Stanford, though, say they may have a fix for the lagging privacy protocols putting anyone who’s ever done a DNA test at risk of indecent exposure. In a study published Friday in Science, researchers say that they have developed a “genome cloaking” technique that makes it possible to study the human genome for the presence of disease-associated genes without revealing genetic information not directly associated with the information being sought.
The hope, they wrote, is to lessen the concerns of genomic privacy violations and genetic discrimination that taint DNA testing.
Applying the principals of cryptography to human biology, researchers were able to correctly identify gene mutations in groups of patients responsible for causing four different rare diseases, as well as the likely cause of a genetic disease in a baby by comparing his DNA to his parents. They could also determine which out of hundreds of patients shared gene mutations. In doing all this, though, they also managed to keep 97 per cent or more of the participants’ unique genetic information completely hidden from anyone other than the owners of the DNA.
To do this, they had each participant encrypt their genome using a simple algorithm on their computer or smart phone. The encrypted information was then uploaded into the cloud, and the researchers used a secure, multi-party computation to analyse it, revealing only the genetic information important to the investigation. They were able to do so within a matter of minutes.
In 2008, US Congress passed the Genetic Information and Nondiscrimination Act, but both loopholes in the law and multiple Congressional actions threaten to erode protections that already exist, making people wary of the consequences of genetic testing in the US. The protections of GINA, for example, do not apply to life insurance, long-term care or disability insurance, meaning those companies are free to ask for genetic information and reject people deemed too risky. Some scientists have said that fears of genetic discrimination could impact the health of patients, if they refuse testing that could help doctors treat them, and could stymie medical research if patients wary of testing opt not to participate in studies.
Ultimately, we will have to strike a balance: A way to share the secrets of our biology with doctors and scientists, while also protecting our privacy.