Mount Sinai Health System in New York and pharmaceutical company Regeneron are collaborating to create a DNA and related health data database focusing on New Yorkers, according to a recent New York Times article. Regeneron will do the sequencing work, and will gain access to the genetic data and partial medical records of each participant.
The prospect raises interesting questions about privacy and confidentiality of genetic information. While direct identifiers can be removed, genetic information by itself counts as an identifier. Genetic information available in other databases has been used to identify crime suspects, for example.
What caught our human-subject-protection-loving eye in this article is the discussion about an earlier database creation attempt, where consent procedures are thought to have impeded enrollment. In that case, potential subjects completed surveys and participated in a consent discussion lasting up to 20 minutes. The proposed study has “boiled down the procedure to watching a short video and providing a signature.” The video is less than 3 minutes; the news story linked above has a link to the video.