Let People Share DNA With a Click
In managing vast databases of genetic information, the NIH has something to learn from Facebook
By Steven Salzberg
The medical world is obsessed with privacy, and this is often a good thing: Patients don’t want personal information about their health to be shared without their permission. The world of research, in contrast, likes sharing: Scientists want everyone — especially other scientists — to know about their discoveries, through publications and other means.
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…
