Direct-To-Consumer Genetics Testing Makes a Splash In Boston

eldavojohn writes "MIT's Technology Review has the scoop on the first annual Consumer Genetics Show starting today in Boston and it looks like the rage these days is genetic testing sans the middle-man physician. And it's getting more prevalent and more available: 'A number of companies offering direct-to-consumer genetic testing have cropped up in the past two years to capitalize on these advances, from 23andMe and Navigenics, which offer genome-wide scans to identify specific disease-linked genetic variations, to Knome, which offers whole-genome sequencing to the wealthy. Any doubts that personal genomics is making its way into the mainstream can be assuaged with a look at Interleukin genetics, a startup that sells genetic tests for heart-disease risk, B vitamin metabolism, and other factors through Amway, the direct-sales company.' Over-the-counter genetic tests may be much closer than you think. The article raises concerns that this information will be misused/misinterpreted or even provide a false sense of security. We've discussed some states prohibiting this last year."

Comments

Disaster waiting to happen

[oldspewey]

Considering the statistical prevalence of botched tests in the controlled laboratory environment of mainstream medicine, I shudder to think how many "wrong" results we will see when a pyramid company like Amway starts offering tests direct-to-consumer.

Re:Disaster waiting to happen

[Belial6]

Seriously, just look at how complex a CPU is now, and think about the fact that everything from airplanes to street lights to your personal finances are controlled by the devices that are insanely complex with insanely complex production processes. Yet people trust these just fine.

Then there is the "But this is your health" idea. People are making huge choices every day with information that is already known to be loaded with errors. Why worry about this being any different. Hell, people are buying "health water" because it has few calories than the other brand of "health water". I would be WAY more concerned with people causing problems to their health due to misinformation about what "water" is than the same person being told that they have a low risk for breast cancer.

Amway = Worst Possible Company for Genetics Ever

[jr76]

People do not possibly comprehend the accuracy required for genetics tests to have any validity, of which even current companies aren't the best at. By using a company like Amway, all that you're going to get is very rough probabilities, exactly the opposite of what consumers want, but what they'll be left with, since they naturally cut corners and need to do a CYA job, leaving that as the net result.

The only hope I can come of with this nonsense is that people begin realizing the NEED for accuracy on scales beyond you can imagine as a result of the useless of genetics tests when you don't do them right.

Note: I've already done these tests (NOT Amway, of course), which is why I know what I'm talking about here.

Re:What about epigenetics?

[ruin20]

We're not looking for a complete work up here. Genetic testing becoming more available and consumable is a good thing as it should spur development in the industry. Additionally there are a lot of conditions for which people can have genetic predisposition and knowing that predisposition may change their treatment and behavior in ways that may actually save money. Being able to better focus and tailor one's individual medical care is a good thing and will hopefully lead to long term cost savings. I hope genetic testing for serious, long term disabilities that can drive up end of life care becomes common place as it could be used as a mitigation for rising cost of treatment.

Re:Genetic Blackmail

[Devout_IPUite]

There was a law passed saying you can't discriminate on genetics. That law and the private health care industry are mutually incompatible, one will have to die within the next 5-15 years.

Re:Genetic Blackmail

[kungfugleek]

Or perhaps a well-known CEO of a wildly successful company keeping his shareholders in the dark about the truth of his personal health? Yes, as with any commonly available technology, the possibility for abuse is staggering.

Re:I had a DTC Genetic testing startup

[Daniel Dvorkin]

I now feel it's morally wrong to offer these tests to consumers who have no idea how to interpret them and what they mean;

It is never morally wrong to give people information about their own bodies. Not ever. In nine years of patient care and twelve years of research, I have never encountered a situation in which deliberately withholding information from a patient was the right thing to do, and at this point I really don't expect I ever will. (I have, unfortunately, encountered many situations in which withholding information was the wrong thing to do, and have had to do it anyway as a matter of policy.) To be sure, it's better if the information is presented by the appropriately trained professional (who may be an MD, or may not, depending on the circumstances) who can best help the patient understand it, but in any case, patient information belongs to patients. It's theirs. They own it.

at least genetic counseling should be offered with the test.

Indeed, and it would be perfectly reasonable for a genetic testing firm to offer its tests on that basis: "We only do the test as part of a package that includes genetic counseling." But once the test is done, no one has the right to force the patients (or perhaps "clients" would be a better word in this case) to get the counseling in order to see the data.