You know you are in for a grilling when the SACGHS says......"While we laud you for coming to participate in the conversation, part of that participation means that you may not like what you hear(More or less quoted from the webcast)"
Then in an "Interesting" Move.......
They ask "Would you be willing to sacrifice your bottom line to offer these services at say 100 USD?"
Wha???? This is such a crazy question.....This Assumes that the data they are presenting is valid, actionable and worthwhile....... All of which.....are debatable...AND that the public would want such services....
What am I talking about? I am talking about the opening of the 30 minute interrogation that was the end of the SACGHS meeting
They even asked the question "Do you have an IRB for all this 'research?'"
The response.................."We're workin on it"
Well, not really the end.....That was reserved for clean up hitter Kathy Hudson...(Whom, BTW I think is brilliant)
Her slide set covers some very key issues and the presentation did as well....
She even manages to quote Joseph Schumpeter, elegantly...
Schumpeter thought that the institution enabling the entrepreneur to purchase the resources needed to realize his or her vision was a well-developed capitalist financial system, including a whole range of institutions for granting credit.
This is very true, but what she quoted him on was this....
“process of industrial mutation that incessantly revolutionizes the economic structure from within, incessantly destroying the old one, incessantly creating a new one.
When looking at the concerns, this slide explained them pretty well
Concerns About DTC Marketing
• Consumers can’t understand genetic information; it is complicated.
•Consumers vulnerable to exaggerated claims.
•Consumers may get tested without adequately considering consequences to themselves and family
•Consumers may forego standard treatments or make dietary or lifestyle changes without proven benefit
• Consumers may seek and receive unneeded and costly care
Companies may not adequately protect privacy of genetic information
•The tests that are offered may not be valid
• The laboratories that perform the tests may not be competent
• Test claims unsupported by evidence
• Inadequate protections for research participants
•No legal barrier to surreptitious testing of another
She Says the Options are
- Let the Buyer beware
- Demand transparency: information as
- Require third party review of accuracy
- Take action against false claims
- Create a category of OTC LDTs
- Expand HIPAA
- Expand common rule
I personally think there are many more...And I am workin on that!
The Sherpa Says:
When speaking anonymously with a panelist they said...."It was surprisingly tame" When speaking anonymously with SACGHS attendees they said "This spells the end of unregulated DTC" So it sounds to me like the 2 sides may be engaged in a conversation where no one is listening to each other.......Or the may not be communicating effectively......