May 9, 2018
The National Institutes of Health is seeking one million people to provide their DNA for a landmark research effort aimed at developing “personalized” methods of prevention, treatment and care for a wide variety of diseases. Personalized medicine, also known as “precision medicine,” uses genetic and other information to develop therapies targeted at individuals rather than groups of people.
The goal of the research project, dubbed “All of Us,” is to supplement, and in some cases, replace the need to repeatedly recruit human subjects for research by providing a huge database of health and lifestyle information for scientists.
The recruiting effort comes during a time of intense interest in data privacy, as authorities recently revealed they used a DNA matching website to find and arrest the man suspected to be the Golden State Killer, who is responsible for a series of rapes and homicides in the 1970s and 1980s.
According to NIH executives, volunteers’ personal data will be protected under the 21st Century Cures Act. The information is inaccessible for subpoenas and search warrants through “certificates of confidentiality” given to each subject, and researchers cannot be compelled to release identifying information in judicial proceedings.
“This is something we thought about,” said NIH Director Francis Collins. “We knew this was going to be an issue in getting people comfortable.”
Legal experts are doubtful, however. Tiffany Li, a lawyer and resident fellow at Yale Law School’s Information Society Project, pointed out that provisions of the Patriot Act allow access to some health information in intelligence matters.
“I would argue that there probably is some way to access the data,” Li said.
For questions, comments or concerns, please contact Jennifer Duell Popovec