Even considering all FDA limitations, I cannot understand how bad their genetic risk scores are.
They have talent, they have lots of customers and data. This is a position other companies, like deCODE, would have killed to be in.
It's quite possible there was no plan at all...
Their business plan was straight out of South Park:
1. Collect lots of DNA
2. ??????
3. Profit!!
That would explain them selling 5 million users DNA information to GSK.
Earlier this summer, the often-scrutinized at-home genetic testing company 23andMe sold genetic data from five million customers to the pharmaceutical company GlaxoSmithKline (GSK). This surprised a lot of their customers who had forgotten that they consented to this when they signed up for the service.
https://cglife.com/blog/23andme-sold-your-genetic-data-to-gs...
This is complicated. The don't just zip up all the customer data and send it over, at least they say that they run aggregated queries for GSK and just tell them the answer. But then they say that the data is "anonymized" before this, which seems unnecessary and impossible.
Imho it's very difficult to anonymize any data, and especially something like DNA. Without an external audit amd some mathematical guarantee (e.g. differntial privacy) I work on the assumption that they do the bare minimum to pass legal muster but anyone who made the effort could confidently associate the data with real people after the fact.
(sorry, it takes a while to load but wired has killed most of their long-term links)
IMHO she and Avey were just naive about the actual science and business of using genomic information for drug discovery. Remember, around the time the company started, the human genome had only recently been sequenced and Craig Venter was trying to capitalize on that, and lots of folks figured it would quickly turn into a multi-billion dollar market.
On the other hand, the product is quite good at finding relatives (identity by descent) and to be honest I wish they'd run 23&me as just that service, without the medical angle. My father did 23&Me mainly to figure out more about his ancestry, but also it helped a number of children conceived via IVF (he had provided a sample for fertility testing many years before) identify and contact him (I can't even imagine what the experience was like; to me, it's just a bunch of half-siblings I didn't know about)
To be fair, a lot of the potential easy money in that market was erased two years after 23andMe was founded when Congress passed the Genetic Information Nondiscrimination Act.
Wait, so a sample he submitted for fertility testing was used to impregnate a number of women? Without his knowledge?