Shame and Scandal in the 23andMe Family

Posted by Pete Shanks September 17, 2014
Biopolitical Times
The beleaguered direct-to-consumer (DTC) gene testing company 23andMe just cannot catch a break. And its problems seem to be largely of its own making.

Last year, the company stopped responding to the FDA’s letters. In response, the FDA finally sent a cease-and-desist letter that basically restricted the company to providing raw data and doing ancestry tests. Sales fell by 50%. CEO Anne Wojcicki has been putting a brave face on this, calling it "a really good experience for 23andMe because it's taking us up a level,” and hired four executives with healthcare backgrounds.

Then Vox, which launched in April as a fact-based website covering both news and background, started looking into some of the possible issues that DTC testing can raise, and published two articles on September 9th. The general overview was:
Genetic testing brings families together
And sometimes tears them apart

The dramatic case study was headlined:

With genetic testing, I gave my parents the gift of divorce

The author explained that through his 23andMe gene test, he had discovered a previously unknown half brother — his father's previously unacknowledged or unknown son. Then the rest of his family found out.

Years of repressed memories and emotions uncorked and resulted in tumultuous times that have torn my nuclear family apart. My parents divorced. No one is talking to my dad. We're not anywhere close to being healed yet and I don't know how long it will take to put the pieces back together.

Vox also revealed that 23andMe was about to move from an opt-in to an opt-out model of revealing close relationships. Up till now, customers have had to answer “Yes” to a question asking if they wanted to find their closest relatives in the company database; the change would have meant that anyone could accidentally be put in touch with family members they didn’t know existed.

The thinking behind the change seems to have been that privacy is no longer possible, a concept that is fashionable in some circles. Apparently Wojcicki did not know about this move, since she soon stated that this was "a decision that should have come to my attention but it did not.” She reversed it. And announced that:

23andMe is hiring a Chief Privacy Officer

It's about time the company started taking these issues seriously. Who wants to be blindsided with news such as, in the words of the old calypso, that your daddy ain’t your daddy but your daddy don’t know?

Previously on Biopolitical Times: