I wanted to post quickly today on a this whole turf topic again. I thank Daniel over at Genetic-Future (Pound for pound the best new blog in this arena). It took some discourse to figure it out.
What happens normally with genetic testing?
Traditionally a lab scientist, being PhD or MD runs the lab and when results are in writes a report that is to be delivered to......Guess who? A physician. That physician or genetic counselor working with the physician interprets the report clinically at the interface of the patient.......presenting the patient the results and the clinical implications. (This is the part that laboratory scientists often never see)
Eureka! I have finally figured out this whole play!!!!
Why is the state cracking down? When these DTC companies, Genetic, SNP, or not deliver results to the patient/consumer......the traditional method is blown away. There is no trained clinician to "re-interpret" these results in a clinical fashion!
I stumbled across this when Daniel said to me (loosely and not in these exact words)
"If your theory (SNPs + Interpretation = Medicine) then I am practicing medicine." That's when it hit me.....if he delivers these results to a trained professional...as is the existing model of genetics, then he is NOT practicing medicine. Because the clinical professional will then re-interpret the results in a clinical light. This makes tons of sense. Why? Most lab physicians and scientists have never spent a day taking care of a patient clinically.... Some have, but not most.
So, I finally get why all the lab guys (and gals) are freaking out at my comments and attacking with the "Physicians are trying to get more turf!"
The simple answer is, "That is Bull$h!z" The lab guys are actually trying a power play here. They are the ones trying to increase their turf without playing by the clinical rules. Why? Because they never had to play by them before! It all makes sense to me. How can we expect non-clinicians to adhere to clinicians' rules? They never had to before....other than this one huge rule......"The results always go to the physician/clinician."
The Sherpa Says:
This regulation is because scientists crossed the line into clinical, NOT because the clinicians want more work...Trust me, they have more than enough. The buffer is already there, no one is making any new rules....these are the same 'ol rules.....that are not being followed. That's all.
Saturday, June 21, 2008
Daniel is a Great Guy!
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8 comments:
Hi Steve,
I haven't seen anyone arguing that genetic testing wasn't previously the exclusive domain of clinicians. For instance, in my first ever post on this (where I introduced the concept of a "turf war") I said:
...to a large extent what's going on here is a turf war between proponents of the old-school medical regulation model and upstart advocates of the free information paradigm of the Google generation.
and later, I paraphrased this as:
...the medical establishment trying to use legislation to claw back deference and power that used to be theirs automatically.
Where you and I differ is on the motives behind the shift away from a clinician-centred approach to testing - the shift that this regulation is attempting to reverse.
To me, it seems clear that this shift has been driven largely (but not entirely) by consumer sentiment. The huge popularity of sites like WebMD demonstrates the growing desire of individuals to gather, analyse and store their own health information independently of the medical establishment. Personal genomics companies are simply extending this sentiment into a new domain by giving individuals direct access to their own genetic information.
The medical genetics community now need to re-affirm its relevance in the new era. There are two ways it can do this. The right way is to prove to consumers that clinicians actually can provide value for money by putting their genomic information in a broader health context. The wrong way is what it is doing right now: trying to force consumers back into the old rules through regulation, a move that will simply serve to further disenfranchise the patient community.
Helix Health of Connecticut seemed to me to be heading largely in that first direction, which is great. But the moment you started openly gloating over regulations that would force consumers to get a doctor's permission to sequence their own genome, you started heading down the second path - and that is what caught you so much criticism.
Daniel,
I am all for everyone having access to their genomci information. And Helix Health of Connecticut is helping these patients interpret and understand these SNP test results.
But let's be serious here. No one is buying these tests. even Burril and COmpany points this out. Everyone is fighting over a moot point! People WANT, I repeat WANT a physicians involvement.
If you do not....I suppose it may be ok to opt out. Provided you have some ability to understand the tests limitations and benefits as well disadvantages.
WebMD is a great model....but what I do see is most all of them going to a doctor....either in the ER for their overdose of vitamin E by self-treating, or in the office to translate what they have read.
I agree with you. Patients have a right to their data. I just want to make sure they have the right interpretation too.
Helix Health of Connecticut is for patient empowerment. We will walk hand in hand with them to help understand what this means.
There is no glee for regulations....just a "We should have regulated ourselves over the last 30 years"
Now we face the consequences of our inability to do such. The same has happened with MDs as well. Thus the DRG, the ICD9, and reduced payments for services.....
I am a huge supporter of patient centered genomic medicine. Those who attended my talk on it at Beyond Genome would then understand while I do support it, I am much more realistic about it.
If you would like my slides on it, send me an email. Suffice to say, the 0.05% of people flaming me and demanding instant access are not the majority. The majority have a health literacy of maybe 30% Genetic literacy is even less. Despite the tools being available to learn health.....i.e. WebMD
So to win, we need massive education pushes, starting in elementary school. I am certain that is something we all can agree upon!
-Steve
I do always find it interesting how you seem to always manage to make the numbers work to your advantage, weren't you just saying the other day that the responses to your post were split 50/50 between those for/against this kind of regulation?
I would also caution about using statements as bold as 'no one is buying these tests' when a quick search of the blogosphere clearly indicates otherwise. Likewise, saying 'people WANT a physicians involvement' is a stretch, all one has to do is look at the general response to the news over the last week or two to see that this is not the case. I'm sure you would get a better response to people if you would state your opinions as opinions, rather than immovable facts, there are many people out there (even some who comment on your blog) who have substantially more expertise than you do, even an ounce of humility could earn you a lot of respect.
Quote: "I thank Daniel over at Genetic-Future (Pound for pound the best new blog in this arena). It took some discourse to figure it out."
I agree. However, the majority of the general public won't be able to understand what the author of the blog is saying. So I agree that Daniel has the number 1 blog for people with a background in medicine and science, but not for the general public.
Anonymous,
Thank you for reading my blog. In response to your comments...
"I do always find it interesting how you seem to always manage to make the numbers work to your advantage, weren't you just saying the other day that the responses to your post were split 50/50 between those for/against this kind of regulation?"
Read my blog closely....this was the set of email responses I received. Not a scientific poll.....
"I would also caution about using statements as bold as 'no one is buying these tests' when a quick search of the blogosphere clearly indicates otherwise."
You did read the Burrill and Company poll didn't you? The blogosphere is an example of sampling error my friend.
"Likewise, saying 'people WANT a physicians involvement' is a stretch, all one has to do is look at the general response to the news over the last week or two to see that this is not the case."
Read the Burrill and Company poll, rinse and read it again....
" I'm sure you would get a better response to people if you would state your opinions as opinions, rather than immovable facts, there are many people out there (even some who comment on your blog) who have substantially more expertise than you do, even an ounce of humility could earn you a lot of respect."
There are some opinions which are just that....and others which, according to this recent poll do appear to be facts. I am very happy for those with much more expertise reading my blog. I am by no means the Chief Sherpa.....I will always acknowledge this.
I hope my lack of humility on this topic doesn't convince you to stop reading.
Seriously, read the Burrill and Company poll.....
Thanks for reading
-Steve
I hope my blog is the best for the "lay" public....whomever you might be.
-Steve
Steve,
It's pretty funny that you can dismiss the blogosphere reaction as "sampling error", while feeling confident that the Burrill & Co poll of 550 "upscale business professionals" is a reliable barometer for the sentiments of the entire genetic testing market.
In any case, the poll doesn't say what you think it says. When asked "When seeking information about a medical condition, which of the following resources are you most likely to consult?" the respondents were overwhelmingly (84%) likely to consult a doctor. That's good news, since doctors are the experts when it comes to medical conditions.
At the same time, though, 65% of respondents would also search Google and 38% would check an online medical website, indicating strong interest in non-clinician sources of medical information. And then there's the question that the poll did not ask: Do you feel that you should need a doctor's permission to have any genetic test done?
As for whether people are interested in having genetic tests: 20% of the respondents said they were likely or very likely to get a test for their genetic risk of disease "in the next few years". If 20% of "upscale business professionals" are genuinely interested in genetic testing, I'd say the personal genomics market is starting to look pretty healthy.
For those interested, an executive summary of the poll results can be found in PDF format here.
the burill poll was not representative. the fact is that many people ARE interested in having these genome tests and that they do want physicians to be involved, however, they do not want physicians to be the gatekeepers.
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