The questions of our time have become – who owns you? Your data? What about your DNA?
For customers who opted into signing a consent for when they signed up to have their DNA sequenced through the company 23andMe, it would appear that their DNA data belongs to a giant database that is being shared and sold to third party medical and pharmaceutical firms.
As Gizmodo reported that the company that has been featured in Walgreens stores to sequence your DNA for a cheap one time cost of $99 has a lot more at stake:
Today, 23andMe announced what Forbes reports is only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe’s data to study Parkinson’s. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it’s been about selling your data all along.
Since 23andMe started in 2006, it’s convinced 800,000 customers to hand over their DNA, one vial of spit at a time. Personal DNA reports are the consumer-facing side of the business, and that’s the one we’re most familiar with. It all seems friendly and fun with a candy-colored logo and quirky reports that include the genetic variant for asparagus pee.
But … it’s always been about enticing customers to hand over their DNA sequences along with details of their lives in a questionnaire to build a giant database—one that academic researchers and biotech companies alike are, well, salivating over.
For most, the concept of keeping a massive DNA database is still as creepy as that episode of the X-Files where they discover a giant filing cabinet system inside a mountain fortress containing smallpox records and tissue samples for every American:
But the truth is there are attempts to database, store, share and sell our genetic information.
The government has been taking and keeping blood and DNA samples of all newborns for decades now, and yet it is barely known.
Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents’ concerns are sparking a new debate about whether it’s appropriate for a baby’s genetic blueprint to be in the government’s possession.
“We were appalled when we found out,” says Brown, who’s a registered nurse. “Why do they need to store my baby’s DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.”
The same information could be used to create a bioweapon, or to cure cancer… the question is, do you trust the consortium of interests behind this research with your most vital data?
What information should be used for research, and how much information should remain private and confidential?
Hopefully the customers who purchased the DNA kits at least realized what they signed up for.