“… These two worlds collide when scientists study human health. For decades, the National Institutes of Health has enforced strict specifications for how and when human-derived data can be shared. Every bit and byte is treated as if it’s part of someone’s personal medical record, and shared only after it’s been scrubbed so thoroughly, the person it came from cannot be identified.”
“When it comes to DNA, however, this is a high bar, because DNA is an identifier. If I sequence your DNA to use it in a study, how can I guarantee that no one will ever figure out the data is yours? What if your cousin makes his DNA public — can I still protect your identity? Probably not.”
“Nonetheless, the NIH is trying to guarantee total privacy as it recruits 1 million U.S. residents for its $1.5 billion “All of Us” program…” Read the full article here.
Source: Let People Share DNA With a Click – By Steven Salzberg, January 22, 2019. Bloomberg.
