Today the Coriell Personalized Medicine Collaborative website goes live. After many months of really hard work they are ready to show everyone what a Personalized Medicine Collaborative Study looks like. I maintain, without the information to be generated by Coriell, we have absolutely no clue what the heck these DTC SNP scans are clinically worth.
I can tell you what 23andMe thinks they are worth-$399 even for study participants.....
Navigenics- 2500 USD unless being a study participant, then it's $375.......or if you only want access for a year it's $495
Coriell says-They are FREE to participants $0, unlimited genetic counseling included!!!
This is a powerful statement and I am proud to be a member of the Informed Cohort Oversight Board of this "First of Its Kind" Cohort Study!
Why is this important:
1) We don't know if people actually do anything helpful with the tests that they buy from DTC.
2) We don't know whether they have any useful additional information to add towards our risk predicition capabilities. In fact 9p21.3 when added to standard clinical factors including family history, was absolutely useless in helping us risk prognosticate for heart disease. So 23andMe is useless in this aspect.
3) These tests should never have been sold as even "pseudo-medicine" without something other than basic science to back them up. As I said in Number 2, even excellent basic science can fail clinically.
4) No One, and I mean NO ONE, should be able to sell your data to another company without your permission!!!!!
The website is fantastic and lists some significant information. Including important Privacy Information.
Certificate of Confidentiality
The Coriell Institute has been granted a Certificate of Confidentiality under a federal law (Section 301(d) of the Public Health Service Act). This means that records from the CPMC study may not be disclosed, under federal, state or local court order, without your written approval. Data that are protected by a Certificate of Confidentiality may be disclosed to the Department of Health and Human Services if required for audits of research records.
The Coriell Institute has been granted a Certificate of Confidentiality under a federal law (Section 301(d) of the Public Health Service Act). This means that records from the CPMC study may not be disclosed, under federal, state or local court order, without your written approval. Data that are protected by a Certificate of Confidentiality may be disclosed to the Department of Health and Human Services if required for audits of research records.
This is stronger than HIPAA and nothing like this is offered by 23andMe or Navigenics!!!
Heck, those companies aren't even considered HIPAA protected agencies. IMHO, that is a risky thing!
Who is Coriell?
Get ready world! The team is world class and the research is the first of its kind in the world!!!
The Sherpa Says: Today marks a revolution in personal genomics, the day that the world sees this research and that it needs to be funded and carried out......AT ZERO COST to all participants!!! This is ethical research, plain and simple.
