RiskBites: 23andMe, FDA and DNA health profiling: http://www.youtube.com/watch?v=VZXDtTNqDuQ
As you’ve probably already heard, on November 22nd the FDA sent a Warning Letter to the personal genomics company 23andMe. As someone who has participated in clinical studies about personal genomics and blogs (occasionally) about this area, my social media streams have been EXPLODING!
Just through Twitter (for which it is easier to grab numbers), in the past 3 days there have been over two thousand more posts mentioning 23andMe, and over 500 new mentions in my own Twitter interactions stream. I cannot keep up, I can’t read them all, much less reply. Friday night the conversation was burning the wires, and I finally had to stop to sleep. I promised I’d get back to folk in the morning. In the morning, I had 250 new interactions. While I tried to read those, I made it through about 50, and in that time another 163 had arrived. During the conversations, a number of us decided we had so many folk in the conversation we needed a new hashtag to corral the content. We decided to use #PGSethics for “Personal Genomics Services, Ethics.” Obviously, this is the topic of the moment, but this blog post is going to require being extremely selective to merely hint at the boundaries of the conversations occurring even as I write this. Also, because the very nature of the topic is enormous, with complex issues, much of the conversation is shifting back and forth between Twitter and blogs. Analyzing all this will make a fabulous doctoral dissertation for someone!
Here are the main hashtags I am using to track this, BUT with a huge caveat. Most of the conversation is not happening through hashtags right now, and I seem to be being cc’d on much of several conversations. And since many of the most pungent comments don’t even include the word “23andMe” the only way to really find what people are saying is by sheer brute force digging. Still, this is a start.
— brett johnson (@granitehead) December 2, 2013
— Matthew Katz (@subatomicdoc) December 2, 2013
— Joyce Lee, MD, MPH (@joyclee) November 30, 2013
— Minerva (@minervies) November 30, 2013
— Gilles Frydman (@gfry) November 30, 2013
— Jewels (@She_Sugar) November 29, 2013
How many consumers (of 400,000) would/could add 23and me data to their PHR (bluebutton preferred)? #PGSethics
— brett johnson (@granitehead) November 29, 2013
— Nick Dawson (@nickdawson) November 29, 2013
— Joyce Lee, MD, MPH (@joyclee) November 29, 2013
— Minerva (@minervies) November 27, 2013
— P. F. Anderson (@pfanderson) November 27, 2013