You know. I have been racking my brain why all of these "early adopters" kicking me on this blog have such an aversion to going to see a doctor. They claim that they want information, but I ask "How many of you know your cholesterol? How about your Systolic Blood Pressure? What about your family history of Heart Disease? What the hell is wrong with all of you. Those who say....."The government can't keep us away from our knowledge or data!" I challenge you to this.
Tell me you had a physical last year, tell me you know your LDL, tell me you know your family history. Then and ONLY then will I listen to your argument against regulation of knowledge. These bits of information will be much more prognostic of your health than a 1 million SNP scan.
That being said, these 13 companies are not just SNP testing companies. Some are pretty huge QUACKS!!! This is the point I am making. The Big 3 are just unlucky to have launched at a time when the government was looking to punish medical quackery. See Bayblab. They should have waited a year or 2 before launching. Then they would be safe. Unfortunately we have not been tending the ship at home. As such we have the upscale consumers.....not willing to take ANY genetic tests. That's why we regulate, to assure the public of quality. My focused friends at Wired have missed that because they are not talking about the quack tests out there....just the Big 3. The Big 3 are small time players in this game.....no offense Dietrich, but there are whole industries passing off nutrigenomic quackery making millions. Also to those impugning my ideals because of financial gain....beware. You don't know my business plan. I make NO money testing individuals.....I repeat I make NO money testing or NOT testing. This is to ensure that my patients TRUST me. To this effect.....
That being said, these 13 companies are not just SNP testing companies. Some are pretty huge QUACKS!!! This is the point I am making. The Big 3 are just unlucky to have launched at a time when the government was looking to punish medical quackery. See Bayblab. They should have waited a year or 2 before launching. Then they would be safe. Unfortunately we have not been tending the ship at home. As such we have the upscale consumers.....not willing to take ANY genetic tests. That's why we regulate, to assure the public of quality. My focused friends at Wired have missed that because they are not talking about the quack tests out there....just the Big 3. The Big 3 are small time players in this game.....no offense Dietrich, but there are whole industries passing off nutrigenomic quackery making millions. Also to those impugning my ideals because of financial gain....beware. You don't know my business plan. I make NO money testing individuals.....I repeat I make NO money testing or NOT testing. This is to ensure that my patients TRUST me. To this effect.....
In a recent review by Burrill et.al. Houston, we may have a problem with those early adopters. They don't trust these tests!!!
The surveyors found that only five percent of consumers said that they were “very likely” to take a disease-specific genetic test in the next few years, and 15 percent said they would be “likely” to take one.
A total of 35 percent said that they would not submit to genetic tests, with 14 percent citing concerns about privacy, 5 percent saying they would not want to know about the results of their tests, and 16 percent saying both reasons would compel them to avoid genetic tests.
Although more than 50 percent of those who responded said that they are concerned about getting cancer or heart disease, only 4 percent of those said they had taken a genetic test for a particular disease. Two-thirds of those who did have a genetic test were advised to do so by a doctor.
The respondents had about the same comfort level of sharing genetic information with their spouses or partners as with their doctors, 72 percent and 71 percent respectively.
Only 22 percent of those who responded were comfortable with sharing results from genetic tests with institutions for research purposes, and almost none would give up that information to health insurance companies (3 percent), and even less to employers (2 percent) and prospective employers (1 percent).
From these findings, Burrill & Co. concluded that “makers of these tests might have more success penetrating the market by working through doctors rather than trying to make the case for their products directly to the consumer.”
A total of 35 percent said that they would not submit to genetic tests, with 14 percent citing concerns about privacy, 5 percent saying they would not want to know about the results of their tests, and 16 percent saying both reasons would compel them to avoid genetic tests.
Although more than 50 percent of those who responded said that they are concerned about getting cancer or heart disease, only 4 percent of those said they had taken a genetic test for a particular disease. Two-thirds of those who did have a genetic test were advised to do so by a doctor.
The respondents had about the same comfort level of sharing genetic information with their spouses or partners as with their doctors, 72 percent and 71 percent respectively.
Only 22 percent of those who responded were comfortable with sharing results from genetic tests with institutions for research purposes, and almost none would give up that information to health insurance companies (3 percent), and even less to employers (2 percent) and prospective employers (1 percent).
From these findings, Burrill & Co. concluded that “makers of these tests might have more success penetrating the market by working through doctors rather than trying to make the case for their products directly to the consumer.”
The Sherpa Says:
Exactly...... It is all about trust
7 comments:
Last I heard, the 13 companies had not been named (except for two of the big three). Yesterday, the LAT reported: "The department said it would not identify the companies involved until it confirmed they had received the letters." Do you know the other 11? If so, I'm curious how you know...maybe I'm missing something.
For what it's worth, I'm still anti-regulation, although your impassioned recent posts have made me less strong in that position. I can certainly see good arguments on both sides.
And thanks for the blog! Always entertaining and informative.
Okay, I know all of those numbers you listed. What if I want the test anyway, simply out of curiosity? Why can't I have the information, because it's dangerous? How is that any different than banning a book because it contains ideas that are "dangerous" in the hands of the public
Please tell me precisely how I could be tangibly harmed by taking this test? If I can't, then there is no reason to ban it. And wasted money is not a good answer. I think everyone can agree that I have the right to waste my money.
Also, i think your point that these are companies looking to rip people off is incorrect. One of the companies was founded by the wife of a Google founder, which means that she isn't doing this out of a need for money, and their prices aren't much different than other companies'.
I don't know how to compare the tests they give, though. Maybe you should post something on that, since I'm sure you know that many of your readers will get these tests even against your recommendation.
From the same commenter as above
I just read the previous post, and I still don't see the case for a ban. So there can be psychological harm from the results, but what about the psychological cost of uncertainty? I see no studies on that.
Also, in our society we can make all sorts of choices that expose ourselves to serious psychological and physical harm (smoking, drinking, etc.). Surely you wouldn't want to live in the type of totalitarian society that bans anything that can hurt you. Why is genetic testing more harmful than other legal ways to hurt yourself?
> How about your Systolic Blood Pressure?
> What about your family history of Heart Disease?
you raise a good point. surely we should outlaw blood pressure cuffs for use without the supervision of a federally licensed blood-pressure counselor.
While we're at it, we should outlaw home pregnancy tests - we can't have people getting such life altering news in the absence of counsel.
Don't even get me started on the emotional & physical strain put on me by my family and knowing about their history. Family trees too need closer government oversight.
If so, I'm curious how you know...maybe I'm missing something.
Note: the "quack" story Murphy links has nothing to do with DNA testing companies:
"WASHINGTON (AP) -- The Food and Drug Administration is cracking down on teas, supplements, creams and other products that falsely claim to cure, treat or prevent cancer even though they are not agency-approved drugs. All are available for sale on the Internet."
http://www.cnn.com/2008/HEALTH/06/17/cancer.fraud.ap/index.html
Just most FUD from Murphy.
Again, you're making the mistake of confusing an informational service like 23andme with the DTC genetic testing services which have had a problematic past. They're really not the same thing and you shouldn't try to lump them together.
Any doctor who told me that he deserves a say on whether or not I am allowed to know the results of my own DNA testing has lost my trust, period.
Because of your stated opinions, I do not, and will never, trust you, sir.
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