With access to more data, scientists will be able to uncover the gene variants linked to common diseases, such as diabetes and Alzheimer’s, and develop new, targeted treatments and cures. People who get their whole genome sequenced will be able to find out what diseases they may be at risk for and begin to take preventative measures.

Yet, concerns about personal privacy and misuse of data from these tests could deter people from getting their genes sequenced and sharing their genetic information with researchers and clinicians. This could stymie medical progress in an important way.

That’s why the Presidential Commission for the Study of Bioethical Issues (a Burness client) has undertaken a review of the privacy and data access issues that arise from whole genome sequencing. Their report, Privacy and Progress in Whole Genome Sequencing, was released last Thursday.

Media homed in on the Commission’s finding that only about half the states in the U.S. offer protections against surreptitious genetic testing. In many states, someone could legally pick up your discarded coffee cup and send a sample of your saliva out for whole genome sequencing to see if you show a predisposition for certain diseases. That information could potentially be used against you in a custody case or posted to a social media site, jeopardizing your job prospects or chance of finding a spouse, said the Commission. (Read stories by Reuters and NPR)

With the cost of whole genome sequencing falling rapidly, such a scenario could become much more common in the next few years.

“It is not a fantasy to think about how, in the future, without clear baseline privacy protections, people could use this in ways that are really detrimental,” Amy Gutmann, PhD, chair of the Commission, told the Associated Press.

The Commission makes a dozen recommendations aimed at protecting individual privacy and ensuring data security. Chief among the Commission’s recommendations is the need for federal and state governments to ensure a consistent floor of privacy protections covering whole genome sequence data, regardless of how they are obtained. Read the full report here: www.bioethics.gov