23 and Me and the "Overcome the Fear of Breach of Privacy" Theory

http://blog.martinh.net/2013/07/crossing-streams-inside-out-university.html

"Whatever system is secure enough to deal with Personal Health Information is secure enough to deal with genetic data."

Direct To Consumer Genetics (DTCG): one more layer

Posted: October 9, 2013 | Author: Antoine V | Filed under: coffee readings |Leave a comment »
"Art Wuster at Seqonomics discuss profitability of #DTCG with #23andMe’s figures as an example.
As of September this year, 23andMe has genotyped 400,000 customers. That’s 220,000 more than a year earlier, meaning that at a current price of $99 per test 23andMe made around $22m in the last 12 months. Contrasting this with the $161m in investment the company has attracted since it was founded in 2007, that’s not great. [Source]
I think there is a layer missing in this analysis and I would say that this is quite good. 23andMe don’t just sell kits and services to its customers. They build a biobank aggregating genotypes and associated phenotypes (the answers to their questionnaires) and that’s the most valuable product of their enterprise.
Certainly the customer get some valuable information about her genetic setup, worth the $99 I think (I paid them ), especially if several members of the family participate. But that’s part of the story.
Hopefully the customers understand that their data are further exploited and that the company expect to earn much more by selling the results they will get from the analysis of this information. That’s were the money is. And the investors must be aware.
I’m fine with that and I hope that they will achieve their goals, because I’m interested about the results: better healthcare, new drugs, etc. I would pay for cancer or multiple sclerosis research also. The $99 came from that budget to support research in general.
On the other hand, it’s upon the people to free this information and make it more widely available, by sharing through other platforms, either benevolently ofreven by being paid for it. It will be necessary to overcome the fear of breach of privacy and the idea that 23andMe is special about that.
Whatever system is secure enough to deal with Personal Health Information is secure enough to deal with genetic data."

http://pgandyou.wordpress.com/2013/10/09/dtcg-one-more-layer/