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THREAD: I've been reporting on DNA testing and scrutinizing my own genome for more than 10 years. Here's an end-of-decade perspective
buzzfeednews.com/article/petera…
After 23andMe, deCODE, and Navigenics burst on the scene with genome scans for health risks, many experts were skeptical of the value of their reports
newscientist.com/article/dn1793…
This was driven home for me when deCODE wrongly concluded I have a 40% lifetime chance of developing Alzheimer's. (That was when it reanalyzed my 23andMe data in a marketing stunt.)
web.archive.org/web/2010012517…
From the start, I was concerned about genetic privacy. Here @Reillymj and I showed how DNA we leave on discarded items like coffee cups could be "hacked"
peteraldhous.com/Articles/How_m…
@Reillymj But as costs plummeted, I expected direct-to-consumer companies to shift to full DNA sequencing. So when 23andMe ran a pilot, I had the coding regions of my DNA sequenced, too.
peteraldhous.com/Articles/Our_g…
@Reillymj But by 2013, when I wrote that piece, direct-to-consumer DNA testing for health was stumbling: deCODE and Navigenics were out of the business, and the FDA was cracking down on 23andMe
buzzfeednews.com/article/petera…
@Reillymj 23andMe’s collision with the FDA wound up being a turning point. It pivoted hard to ancestry and finding genetic relatives, going head-to-head with a new competitor, Ancestry
buzzfeednews.com/article/petera…
@Reillymj It's been a wild ride since then, as DNA testing shifted to resemble social networking, and millions of us were sold on connecting to our genetic relatives and ancestral roots, through ads like these
ispot.tv/ad/wppp/ancest…
ispot.tv/ad/dzgG/ancest…
@Reillymj Fast forward to 2018, when we learned that a popular online genealogy database, GEDmatch, was the key to the arrest of the alleged Golden State Killer.
buzzfeednews.com/article/danver…
@Reillymj Soon, a company called Parabon NanoLabs was solving cases through genetic genealogy at the rate of about one a week. @virginiahughes I decided to run our own experiment, setting me that task of identifying colleagues from their DNA. I got 6/10
buzzfeednews.com/article/petera…
@Reillymj @virginiahughes But there was a privacy backlash, first in January 2019 after @SalHernandez reported that Family Tree DNA had let the FBI search its DNA database without informing its customers
buzzfeednews.com/article/salvad…
@Reillymj @virginiahughes @SalHernandez Then in May, GEDmatch relaxed rules that were supposed to limit cops to investigating homicides and sexual assaults. It was a "slippery slope," complained privacy advocates
buzzfeednews.com/article/petera…
@Reillymj @virginiahughes @SalHernandez It isn’t just whether cops can run searches against your DNA. 23andMe asks for consent to share your "de-identified" DNA profile as it strikes deals with big pharma to use its database to help develop new drugs
buzzfeednews.com/article/petera…
@Reillymj @virginiahughes @SalHernandez You may be fine with this. But there's really no such thing as "de-identified" DNA. As 23andMe warns: “In the event of a data breach it is possible that your data could be associated with your identity, which could be used against your interests.”
23andme.com/about/privacy/
@Reillymj @virginiahughes @SalHernandez Many stories I didn't get to revisit in today's end-of-decade piece, including the time I wrote: "I am not in fact the result of a coupling between human and alien, nor the product of some twisted genetic experiment."
newscientist.com/article/dn1768…
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