Monday, October 19, 2009

Stated Another Way.......

Last week I was criticized harshly about the shock and awe I used with the picture of a parasite being passed from an animal and comparing it to what needs to be done with DTC Genome Scans.

I was asked to be critical and analyze the work. And frankly, I am a little embarrassed. That doesn't mean I will take down the post. It means I will begin to state the rationale for my argument.

The premise is this, DTC Genomics has cast a shadow on the field of genetics and genomics. In not only the clinical utility but also the scientific utility, this boondoggle has screwed the field. The community had been seduced by receiving offers of "Advisorship" for "The Next Google" or whatever the pitch was.

A few smart people bit, including George Church, who I think was hurt the most. His PGP received less attention and less gravitas as it was lumped in with 23andSerge and Navigenics cocktail parties in SoHo......

I said this back in 2007 when I had coffee with Amy Harmon, prior to her Pulitzer . She asked me why I was against this DTC movement. Well, unlike then I have thought about this for a while now.

The singular reason is: "The marketing and promotion of these services has caused a tremendous amount of confusion as to what exactly is important"


"You don't mean your rant about how this is medicine and should be regulated as such?"

Well, that is an issue of importance. They have been playing important, just like a TV doctor would.

"You don't mean the issue where they steal your genome?" Well, again, they may be confusing what is important in the genome and making you think their 500k SNP analysis IS important.....

"You don't mean the rant about how doctors confuse Personalized Medicine with DTC Genomics?"

Again, this is an issue about what is important and what is not.

Detracting attention from that which is important is probably the biggest crime that is being committed here. What we are now going to see is a phase of skepticism drawn to the whole field of genomics. Don't believe me? Read here

"As scientists including Venter aim to usher in an era of personalized medicine based on individuals’ biological differences, companies such as 23andMe and Navigenics already offer tests that plumb people’s genetic makeup. The article’s authors said “the nascent industry” could improve predictions by developing a consensus on how to do the analyses."

So I ask, "Is the nascent industry personalized medicine? Or is it 23andME and Navigenics?"

By lumping Personalized Medicine with these companies, you begin to take on their traits......

"Google-Backed DNA testers Don't always agree"

Ok, so now personalized medicine is Google Backed and the results are sketchy at best.......

Do you see what I mean?

Don't believe me? Read This
The Journal? Personalized Medicine. the Article? DTC Genomics......

I hope you see what I am getting at. Still having a hard time?

Take David Agus' MD Quote

"Make preventative genomic medicine part of your practice"

Meaning: Use Navigenics DTC Genomics test and you will be practicing "preventative genomic medicine" The new Marketing Word for "Personalized Medicine"

So, there ya go. They want to be personalized medicine, yet disclaim any use of the test for personalized medicine.

This huge circus is one of the biggest distractions to ever befall Personalized Medicine, especially as the story of the epigenome begins to unfold.

We have to ask ourselves
1. "What was gained by supporting these companies?"
2. "What did these companies do to advance personalized medicine?"
3. "What researcher gained greater attention or funding because of the DTC Genomic Buzz?"
4. "What percentage of physicians gained greater appreciation of genomic medicine?"

IMHO, these companies have mad a mockery of personalized medicine and the research that is going on in the space

The Sherpa Says: Hopefully that will explain why I feel that these companies are parasites playing off of our name.....


Molecular Creativity said...

The value, in part, of the DTC community and genetic testing in general, is genuine education with articles in business journals, for example. Lots of people are learning genotype does not mean phenotype. Predicting disease based on genotypes is/was problematic and people are learning this fact. Regarding formal education (now lacking), medical genetic knowledge among professionals may be stimulated by patients asking genetic questions. Ignorance of the genetic testing information may be a stimulant to primary care doctors to learn, who remain refractive to the educational process (CME).

BioBud said...

This Sherpa is lost. There is no way to make your mental construct of genetic regulation work.... Unless you make it illegal for people to get their genome sequenced and/or make it illegal for others to post information about genetic findings onto the web (i.e. SNPedia) then you can't control it... Everyone is just going to have to get used to this. this is just like doctors who said they didn't have "time" to discuss health information people were printing out from the web back when companies like webMD first came out... Had you been around back then, you would have been decrying how webMD was "practicing online medicine" and destroying the medical system...

Steve Murphy MD said...

@Molecular Creativity
I challenge you to each of these value points.

1. Education in business journals? Who reads business journals?

2. Prove to me that people are learning that genotype does not mean phenotype. When you confuse what is important with what is not, there is now way to determine what is truly important (Phenotype)

3. Doctors being stimulated to learn genetics because of some web print out? Have you asked your doctor if they would do this? Dream on.

Steve Murphy MD said...

No. It is the community who has lost their way. We need to ask ourselves, what is important. This post is not about a call for regulation, it is a call for the community to walk away from the crazy path which appears easier, yet is fraught with peril.......

You should turn your back on the DTC marketing chum and do something truly useful.....


Molecular Creativity said...

"The times they are a changing" Bob Dylan. Education in genetics is being forced on doctors, in part, by media and interested customers-not patients. I think, Time magazine raised the bar regarding the impact of this new "business" and it is not ignored by the medical community, Harvard will NOW start training pathology residents about genetic testing.
Regarding phenotype/genotype, there is education, slowly people are realizing it is not about genes, but environmental/gene interactions. Predicting future disease based on genetics was/is/will be challenging, in part due to the disconnect between genotype and phenotype.
Doctors lost control on this area of "medicine" when they failed to include genetics as part of formal training-customers are now helping to educate-challenge their doctors for advice about data that is foreign for vast majority of docs.,28804,1852747_1854493,00.html

Steve Murphy MD said...

Since when did the media force education on physicians? I mean real education not some cursory knowledge of crap.

What I have a problem with is industry sponsored education where the "industry" is doing the education.

When they determine what is "important" then often the clinician and patient lose.

As for Time magazine....good for them.

Molecular Creativity said...

Industry educating doctors has a long history, I remember the dinner cruises in Boston harbor-weekly for certain departmental residents. I also know a few doctors, primary care who eat about 50% dinner meals on industry via education-I personally enjoy all the free pens/pencils, sadly this ending for some. Industry has been the major forum for CME, I think, not sure. Drug companies tell doctors and patients what to use, I think advertising should be banned, big waste of monies. How much marketing does big pharma spend compared to R/D?
DTC genomics has provided educational value and that education has not yet resonated with doctors but it has gained the attention of many people-outside of medicine-business for example.