Genetic privacy

Genetic privacy involves the right or mandate of personal privacy concerning the storing, repurposing, provision to third parties, and displaying of information pertaining to one's genetic information.

A 2013 study revealed vulnerabilities in the security of public databases that contain genetic data that allowed researchers to discover the identity of anonymous research subjects whose genomes had been sequenced as part of a genomics project. Research subjects could sometimes be identified by their DNA alone.

Mark Bender Gerstein, a Yale professor who studies large genetic databases notes that "research subjects who share their DNA may risk a loss of not just their own privacy but also that of their children and grandchildren, who will inherit many of the same genes".

Furthermore, the vast databases of corporations or states might get breached by criminals or governments. There is a controversy regarding the responsibility a DNA testing company has to ensure that leaks and breaches do not happen. Regulation rules are not clearly laid out. What is still not determined is who legally owns the genome information: the company or the individual whose genome has been read. There have been published examples of personal genome information being exploited. Additional privacy concerns, related to, e.g., genetic discrimination, loss of anonymity, and psychological impacts, have been increasingly pointed out by the academic community as well as government agencies.

Dr. David Altshuler of the Broad Institute of Harvard and M.I.T. notes that the amount of genetic data that has been gathered so far is minuscule compared with what will be coming in the next few years, making it important to address the problems before the data deluge makes them worse, saying that they "see substantial issues" and "want to have serious discussions now".

A 2015 study found that state genetic privacy laws take three alternative approaches to protecting patient privacy: requiring informed consent on the part of the individual; restricting discriminatory usage of genetic data by employers, health care providers or insurance companies; or limiting redisclosure without the consent of the individual or defining genetic data as the 'property' of the individual" and that "giving users control over redisclosure encourage the spread of genetic testing, but that the informed consent approach deters individuals from obtaining genetic tests".

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Wikipedia