Balancing personal privacy, profusion of genetic data

If you want to know more about your genes — even just for curiosity’s sake — it’s easy to sidestep the doctor these days. There’s a budding industry willing to scan your genome and provide that information for a fee.

This week a national commission set out recommendations for protecting individual privacy as medicine gets better at reading the genetics that make each of us different.

“We need a system that inspires trust, rather than uncertainty or distrust about how these data are going to be used,” said Amy Gutmann, president off the University of Pennsylvania and chair of the Presidential Commission for the Study of Bioethical Issues.

Gutmann and colleagues want to make sure whole genome sequencing continues to power medical advances without impinging on personal privacy.

Their report is called “Privacy and Progress in Whole Genome Sequencing.” It encourages better, and more consistent, security practices to guard the huge databases and bio-repositories that now house individual genetic information.

She’d like to see standard, clear consent forms for people who donate their genome information for research to make sure people know how their data will be used.

“We need a broad base of data,” Gutmann said. The data from whole genome sequencing will be as powerful as the communities of people that it reflects. So if it only reflects, for example, on very privileged individuals, it will help very privileged individuals.”

University of North Carolina researcher Howard McLeod said the report shows inconsistent rules across the nation.

“Some states have very careful regulation that’s well thought out — that is helpful yet protective. Other states, you’d think they don’t even know there’s a genome,” McLeod said.

He studies emerging ways to figure out which drugs — and doses — work best, and says scanning a patient’s genome is the power behind that personalized, some call it precision, medicine.

In Camden, the Coriell Institute for Medical Research is looking for participants to join its study of the ways personal genome information can be best used in health and medical decision-making. McLeod, is a member of  Coriell’s advisory board.

He said he’s glad the president’s commission is debating the ethics and working to shape the rules.

“The technology is such that one can get your genome analyzed pretty cheaply, less than the cost of an MRI scan. And so we’re at a time when we really need to sort this out” he said.

Federal law already blocks using genetics to weed out people in hiring or health insurance decision, but companies could use that information to screen customers for life or long-term care insurance.