As NIH’s Massive DNA Sharing Project Kicks Off, Officials Face Concerns Over Privacy After Alleged Serial Killer’s Arrest
The "All Of Us" initiative's goal is to enroll 1 million people in a research effort aimed at developing “personalized” methods of prevention, treatment and care for a wide variety of diseases. And, after news broke that the capture of the alleged Golden State Killer was made possible by genetic information found on the internet, NIH Director Francis Collins wants participants to know their data will be carefully shielded.
The Associated Press:
US Seeking 1 Million For Massive Study Of DNA, Health Habits
Wanted: A million people willing to share their DNA and 10 years of health habits, big and small, for science. On Sunday, the U.S. government will open nationwide enrollment for an ambitious experiment: If they can build a large enough database comparing the genetics, lifestyles and environments of people from all walks of life, researchers hope to learn why some escape illness and others don’t, and better customize ways to prevent and treat disease. (Neergaard, 5/1)
The Wall Street Journal:
NIH Seeks One Million Volunteers For Medical Database
The endeavor by the nation’s leading government medical-research entity is aimed at deciphering the workings of poorly understood maladies ranging from cancers to migraines to dementia. The database will be open to medical researchers and will initially consist of data on volunteers age 18 and up, regardless of health status. Children will be eligible beginning in 2019 if their parents or guardians consent. (Burton, 5/1)
The Washington Post:
NIH Seeks Health Data Of 1 Million People, With Genetic Privacy Suddenly An Issue
The “All of Us” recruitment effort begins Sunday with community events in seven sites around the country, where people will be encouraged to sign up for the mammoth research project. Its goal 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 to plumb. The effort comes during a time of intense interest in data privacy. Authorities recently revealed that they had used DNA retrieved from a crime scene and GEDmatch, a website of genetic information, to find and arrest the man suspected to be the Golden State Killer, who terrorized Californians with a series of rapes and homicides in the 1970s and 1980s. (Bernstein, 5/1)
The Associated Press:
Genetic Website Subpoenaed In California Serial Killer Probe
Investigators hunting for the so-called Golden State Killer subpoenaed a genetic website last year while investigating an Oregon man who was misidentified as a potential suspect. The revelation that investigators compelled a genetic company to provide user information adds to a growing debate about legal and privacy concerns involving law enforcement and companies whose millions of users submit their DNA to discover their heritage. (5/1)
