If you would like to watch the IOM conference you can check out day one here
My take away from the first day.
"Do you guys (DTC) know what you are doing?"
"I wonder what kind of research and the quality you can provide?"
"I can't believe you aren't regulated already."
I think there are some really big issues here and there is some confusion.
Questions that remain to be answered..........
1. "Will these companies sell the customer/patient DNA/data?"
2. "Are these companies practicing medicine?"
3. "How do we quantify personal utility?"
4. "Will regulation really kill these companies?"
5. "What rigors and hoops will be required for these companies with research?"
6. "What will the GAO find about today's DTC companies?"
The best thing these companies have done is raise the need for answers and refined regulations.
The worst thing these companies have done is put customers/patients at risk for
1. genetic theft
2. harm via untrained physician
3. false predictions and false hopes
4. 3rd party harm
These companies should be behaving more responsibly, it is sad that they continue to market deceptively. It is also sad that they have not more carefully thought out their research aims. They clearly don't care about the chain of trust.
The Sherpa Says: I think the IOM and National Academies are skeptical at best. Which is the right attitude IMHO. DTC has a lot to prove and it hasn't done anything to do that yet.
Wednesday, September 2, 2009
National Academies skeptical at Best.
Posted by Steve Murphy MD at 7:47 AM
Labels: 23andme, Helix Health of Connecticut, IOM, Muin Khoury, national academies of science, navigenics
Subscribe to:
Post Comments (Atom)
1 comment:
Good article...the doubt and concern is genuine.
Post a Comment