California Pushes Back on DNA Testing
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- kushan
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more from Tech:
http://www.wired.com/medtech/genetics/news/2008/06/portfolio_0617
Is reading someone's genetic code the same thing as practicing medicine? That issue has always loomed over the nascent direct-to-consumer genetic-testing industry, which includes such well-known names as 23andme, Navigenics, and DeCodeMe.It has become very real now that California public-health officials have ordered 13 online companies to immediately stop offering their services in that state.
The companies offer genetic tests that look for DNA mutations associated with a higher risk of developing heart trouble, dementia, or other maladies. Some critics have said that the science behind some of these tests is relatively new and may be incomplete.
Others say the tests are dangerous because they can identify risk factors for some conditions that have no treatment, such as Alzheimer's disease.
The California Department of Public Health contends the services violate medical-testing rules that require a physician's involvement and proof that tests produce a valid medical result.
The real issue, however, may be as much about turf and how society will react to this new technology as patient safety.
Companies offering the tests have made a point of sidestepping doctors, insisting that consumers have a right to know the information coded in their genes. They also have said that the results they deliver are informational, not diagnostic.
Bypassing traditional medical outlets is an important issue for these companies, since much of the medical establishment hasn't yet embraced widespread genetic testing. Traditional health-care providers tend to be skeptical of the usefulness of the results.
That skepticism would not bode well for a business model that depends on them to be the gatekeepers for ordering these tests. Requiring a doctor's approval also seems overly paternalistic to many believers of the Web 2.0 ethos of free access to personal information.
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seeker561
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Open access also creates avenues to abuse. How would you feel if the next time you go for a job interview, they ask you to spit in a cup so they can have your DNA tested?
- 1 year ago
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seeker561
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squeege
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This is pretty interesting. For now this sounds more like a novelty than a diagnostic tool. Genetics is still in its adolecense as of now, but in the future this may be a pretty common thing.
- 1 year ago
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squeege
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kushan
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A comment about the news that California health regulators have sent cease-and-desist letters to a baker's dozen genetic-testing firms, forbidding them from selling tests without a doctor's order:
To me, this reflects as much a cultural disagreement as a legal or regulatory one. That is, there is the assumption in the states' letters that, because genetic information has medical implications, the dissemination of this information must fall under their jurisdiction.
But there are, in fact, all sorts of areas in life that have medical implications that we don't consider the province of government -- a pregnancy test, most obviously. We neither want nor assume that doctors should have a gatekeeper role in establishing whether we are or are not pregnant, nor do we look to the state to protect us from that information. Pregnancy is a part of life, and it has all sorts of implications and ramifications. So too with DNA.
To my mind, genetic information is a new sort of personal information that the state and even the physician community are terribly slow and old-fashioned in reckoning with. Even those with knowledge in genetics, such as the Gene Sherpa blogger, assume a paternalistic tone: "I am just shocked and awed that some in the public think that they can do this on their own without professional help. Do you build your own home? What about fight your own court cases? Some do their own taxes ... but only when it isn't complicated. Trust me, this IS COMPLICATED!"
Now, I agree with Steve Murphy about a lot of things, but I totally diverge from him on this. Having been tested by both 23andMe and Navigenics, I can say that, yes, it's complicated. But frankly I don't need a doctor, and I don't want a doctor, to facilitate my understanding of what my DNA means. Yes, there are some medical implications, but these are hardly live-or-die moments.
What's more, when I have shared my results with physicians, they're largely greeted with a shrug. I don't want to "trust" a doctor, no matter how skilled or well trained, I want the access to my genetic data just as I want to know, without government approval or physician filtering, all sorts of information about myself.
The assumption that there must be a layer of "professional help" is exactly what the new age of medicine bodes -- the automation of expertise, the liberation of knowledge and the democratization of the tools to interpret and put to use fundamental information about who we are as people. Not as patients, but as individuals. This is not a dark art, province of the select few, as many physicians would have it. This is data. This is who I am. Frankly, it's insulting and a curtailment of my rights to put a gatekeeper between me and my DNA.
This is *my* data, not a doctor's. Please, send in your regulators when a doctor needs to cut me open, or even draw my blood. Regulation should protect me from bodily harm and injury, not from information that's mine to begin with.
- 1 year ago
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kushan
