Thursday, October 30, 2008

TIME Magazine Panders to Google Overlords, Silicon Valley Czars, Hollywood Charlatans

Filed under: Society

This is just a hoot! TIME magazine has released its guide to 50 Best Inventions of 2008, and the numero uno on the list, The Retail DNA Test, is not even an invention. Based on old technology, called SNP genotyping, retail DNA testing (also known as direct-to-consumer (DTC) genetic testing) is a growing industry with services that many consider to be of questionable value. Don't take our word for it: we are just doctors who blog in pajamas. Take note instead from the Genetics and Public Policy Center at Johns Hopkins University, which has just received a two-year NIH grant to study the industry:

Right now, [Gail Javitt, a principal investigator at the Genetics and Public Policy Center] explains, we know very little about the DTC landscape or how it will affect health and health care in the future. Genetic tests for more than 1,300 diseases or conditions are available clinically, and the number is growing rapidly. Theoretically, almost any genetic test for these diseases could be offered directly to consumers, and more than 30 companies already have entered the DTC genetic testing market, including major players Navigenics, 23andme, and deCODE...

“There is a lot of hype and a lot of angst about how personal genome testing will play out in health care,” Javitt noted. “What’s missing are hard facts about this industry and its consumers, and what the public’s motivations for, and experiences with, these tests have been.”

And if you read TIME magazine's stupendous award announcement, you will notice that the editors are not even sure themselves:

California and New York tried to block the tests on the grounds that they were not properly licensed, but have so far been unsuccessful. Others worry about how sharing one's genetic data might affect close relatives who would prefer not to let a family history of schizophrenia or Lou Gehrig's disease become public. And what if a potential mate demands to see your genome before getting serious? Such hypotheticals are endless. And some researchers argue that the tests are flawed. "The uncertainty is too great," says Dr. Muin Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention, who argues that it is wrong to charge people for access to such preliminary and incomplete data. Many diseases stem from several different genes and are triggered by environmental factors. Since less than a tenth of our 20,000 genes have been correlated with any condition, it's impossible to nail down exactly what component is genetic. "A little knowledge is a dangerous thing," says Dr. Alan Guttmacher of the National Institutes of Health.

So what to make of the award announcement? We say, TIME was probably sucking up to people whose lives have become a never ending effort to hype things onto the common man. You see, whether you take 23andme's Anne Wojcicki and her husband Sergei Brin (co-founder of a website Google.com, an advertising agency with no customer service), or 23andme's investor movie mogul Harvey Weinstein, or Navigenic's venture capitalist John Doerr, they feel that they are changing the world. But really, considering the hype, aren't they more interested in making money and elevating themselves to the level of revolutionaries, than furthering medicine and its technology? Doing a genetic test is not like listening to an iPod, or watching Pulp Fiction. Has Weinstein ever heard of false positive medical results? How about that every test always has such results? And what about cost-benefit analysis, so important in medicine? Do you really believe that Wojcicki can explain why we do mammograms every year, but not chest X-rays? After all both can detect cancer...

We say these VIPs have all the right to run their enterprises, but to say that what they offer is an important service and revolutionary service would be far off the mark. TIME can do it, but our modest team of medical tech enthusiasts just can't.

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replies: 7 comments
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Time certainly blew that one. There are so many more inventions that rank as more useful. Want to know how that happenned? 3 words.....follow the money.... Ann Moore and Linda Avey spoke at a conference together sponsored by Time, INC. http://www.timeinc.net/fortune/conferences/women07/women_program.pdf

My guess is that the link is way deeper, but it never hurts to be friends with the CEO of the magazine who ranks you number one......

Wonder why Navi didn't make it?

-Steve
www.thegenesherpa.blogspot.com


Posted by: Steven Murphy M.D.
on October 31, 2008 05:43 PM GMT

23andMe's blog post on what the invention is:
http://spittoon.23andme.com/2008/10/30/creating-the-invention-of-the-year-a-look-behind-the-scenes/


Posted by:
on November 1, 2008 11:19 AM GMT

Services like these finally provides a torch in a very dark cave for average people. It may not be completely accurate but any light is better than total darkness, which is all I get from our current medical system.


Posted by: Fred
on November 1, 2008 11:47 AM GMT

Did you ever hear about the drunk who lost his keys? He kept searching under the lamp-post when finally a friend came up to him and said "Why haven't you looked anywhere else?" the durnk said "Why? This is where the light is..." You see, the "light" that is provided by this test is false at best....at worst it is like the light of the deep-sea angler fish, which uses this light(which is attached to its esca/antenna) to lure its prey. You see the other fish is dazzled and attracted by the light it inevitably follows it.....only to end up in the stomach of the anglerfish......

That's the problem, the laypublic is dazzled by a trick...nothing more. Unfortunately Fred, you sir have been had by quackery....I am sorry.

-Steve
www.thegenesherpa.blogspot.com


Posted by: Steven Murphy M.D.
on November 2, 2008 04:39 PM GMT

So what the spittoon is saying is......we basically took this technology (which wasn't invented by us) repurposed it for Clinical (oops) non-clinical but also non-research(at the beginning no one ate 23andme said research) use and created a web user interface, by wading through data and databases which are free to access, and presenting that data to the uneducated lay public in a format that they could understand.....even if that format gave incorrect information or that the people couldn't understand it anyways.....oh and diagnosed risk for disease (without a CLIA lab or a medical license)............Yeah.....sounds like the invention of the year to me too........

-Steve
www.thegenesherpa.blogspot.com


Posted by: Steven Murphy M.D.
on November 2, 2008 04:46 PM GMT

I agree with Medgadget. See my recent post (with podcast) entitled: No One Really Knows What Most Genetic Tests Mean.

http://getbetterhealth.com/no-one-really-knows-what-most-genetic-tests-mean/2008.10.26

Until we know how to interpret the tests, selling them DTC is a racket.

V


Posted by: Dr. Val
on November 3, 2008 07:36 AM GMT

Ironic how this blog post is criticizing Google and 23andMe and its surrounded
by Google ads. Talk about "biting the hand"....

How can anyone respect the opinion of Dr. Murphy that DTC tests are "quackery" when
he is the founder of a business which counsels people on genomic test results? He would stand
to benefit greatly if DTC tests are regulated. How about some "full disclosure" Dr. Murphy?
Are you going to tell me that you would refuse 23andMe clients because you say the tests
are "quackery"?

Look in a mirror Dr. Murphy the next time you say, "Follow the money".


Posted by: Educated Lay Public
on December 7, 2008 09:51 AM GMT

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