The genealogy techniques used to catch the alleged Golden State Killer couldn’t be used on any DNA samples in the National Institutes of Health’s million-person study to develop targeted treatments.
Authorities arrested Joseph James DeAngelo on April 24 in connection with a dozen deaths and about 50 rapes in the 1970s and 1980s, after comparing DNA collected from the crime scenes with online genetic profiles.
After news broke of DeAngelo’s arrest, Eric Dishman said the National Institutes of Health fielded questions from “participants, politicians, and reporters alike” about the potential use of these genetic samples in criminal cases. “That would not happen in this case,” Dishman, director of the NIH’s All of Us Research Project to advance precision medicine, said during a May 1 press call.
Building a Research Database
Precision medicine refers to an emerging approach for disease treatment and prevention that seeks to maximize effectiveness by taking into account individual differences in lifestyle, environment, and genes. The NIH has been building All of Us for more than three years. It’s an effort to create a national database of at least 1 million Americans that reflects the nation’s diversity to increase understanding of health and disease.
Enrollment for All of Us opens nationally May 6. One of the top priorities in developing the project was making sure the program could mitigate privacy risks for anyone who agreed to donate their data to the project. In addition to the privacy and security principles offered in the project, Congress also beefed up protections in the 21st Century Cures Law (Pub. 114-255) that was enacted in December 2016, Dishman noted. While Cures is primarily intended to spur new drugs and devices, the law also streamlines a decades-old program called Certificates of Confidentiality.
These certificates are not new; they’ve been around since the 1970s so researchers could study illegal drug use. They protect researchers from disclosing the names or other identifying characteristics of research subjects in response to a subpoena or other legal demands. The NIH used to issue them on an ad-hoc basis, but the Cures law automatically provides these confidentiality protections to any research participants who disclose criminal activity, disease status, or other sensitive information as part of a scientific investigation.
The NIH said under a notice issued last September (NOT-OD-17-109) that it will apply the confidentiality protections to all studies using identifiable, sensitive information.
“It actually protects participants from having their data used by federal, state and local civil, and other government agencies,” Dishman said. If somehow authorities still obtained those data, “there are additional immunities and inadmissibility of that data being used against them in legal proceedings.”