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Kyte
2010-09-12, 04:56
Sorry if this has been discussed before but I want to know every possibility if I'm spending hundreds of dollars on a genetic test.

I was reading this article, which is over 2.5 years old admittedly, and I got wondering how much everyone here knows about the accuracy of the tests:


The service is likely to provoke controversy in the UK, where authorities have warned that genetic tests are often meaningless yet can provoke needless anxiety among those who take them. Last month the Human Genetics Commission condemned them as a dangerous waste of money and called for regulations to control their marketing.

[...]

In the UK, however, the Human Genetics Commission's report on direct-to-consumer tests warned that neither exact nor complete knowledge of what differences in the chromosome pairs mean exist yet. "Our advice to the public is that with many of the tests currently on the market people are wasting their money," said Dr Christine Patch, co-author of the report. "At the moment the science is simply not strong enough. The tests could be positively harmful if the results caused unnecessary anxiety or gave false reassurance."

Dr Helen Wallace, director of the pressure group Gene Watch, is equally concerned. "Our main concern is that the human genome is set to become a massive marketing scam," she said, adding that special diet foods and pills had been promoted on the back of tests. "Genetic tests like these are not regulated and the science is still poorly understood - so there is a real danger people could be misled about their health."



The Guardian (http://www.guardian.co.uk/science/2008/jan/22/genetics.health)

The article is continued by the author on the website which he shared the initial news:


Ouch. There's certainly some valid criticisms in there, but the alarmist tone is a little over the top. I don't think anyone would argue with the statement that "neither exact nor complete knowledge of what differences in the chromosome pairs mean exist yet" - in fact, it's likely that it will be decades before we can even come close to fully understanding the effects of human genetic variation. That doesn't mean it's not interesting to look at what we do know.

I liked this statement from 23AndMe's founders:
Wojcicki and Avey argue that those who want to know about their genetic make-up should be treated as adults and given the data, together with careful explanations of what it means.
I couldn't agree more, and I hope that 23AndMe lives up to this ideal (so far, what I've seen from the company has been largely reasonable, but I'd welcome examples to the contrary).

Appropriate regulatory frameworks will help, but one factor that I think will eventually rein in the scammers is the raw power of the internet. If providers of direct-to-consumer genetic testing fail to provide clear and accurate information about the predictive power of their testing, they should (and will) be called on this by independent bodies and external reviewers (such as genetics bloggers!). With a few Google searches consumers should be able to get a fair idea of how much they can trust a testing company - and eventually, most companies will find it is in their own best interests to provide accurate information up-front.

Genetic Future (http://www.genetic-future.com/2008/01/uk-controversy-over-23andme.html)

Those who have been tested seem happy with their results but what is the possibility that this information is wrong and what would be the extent of misinformation if it does occur?

Polako
2010-09-12, 09:00
The raw data provided by 23andMe is extremely accurate. The interpretations they provide of that data, however, aren't yet obvious enough for the average Joe. I certainly don't think they'd doing a bad job though, and the real problem is with the many ignorant people out there, including some so called science journalists.

blank slate
2010-09-12, 10:06
I'm not surprised, and I'm certainly not expecting the potential for tighter regulations in most countries to go away anytime soon. The US Food and Drug Administration over here essentially fired a warning shot to 23andme, deCODEme, Navigenics, Illumina, and Knome a few months ago as well.

http://pagingdrgupta.blogs.cnn.com/2010/06/14/fda-warns-companies-selling-at-home-genetic-tests/


On Friday, the FDA sent letters to five companies - 23andMe, Navigenics, DeCODE Genetics, Illumina and Knome – notifying them that they must submit their products for review or discuss with officials why their products do not require FDA approval. In its letter to 23andMe, the agency said it wants to prevent consumers from being “misled by incorrect test results or unsupported clinical interpretations.”

However, the FDA did not say that such genetic testing services should be taken off the market.

The five companies had mixed responses to the FDA’s warning. 23andMe said Friday that the company disagreed with the FDA’s decision, while representatives for Knome said that the company welcomed the FDA’s review.

You can read the official letter in full (2 pages) here on the FDA's website: http://www.fda.gov/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215240.pdf

Just as a precautionary measure, we should all download our raw data and screen cap our results while we still can. ;)

Kyte
2010-09-13, 05:03
So would it be safe to say, taking the test wouldn't necessarily be a waste of money because even if the interpretations are inaccurate, the raw data is reliable enough to be used as research improves and more knowledge is gained on the field?

birko19
2010-09-13, 11:40
Obviously if you're interested in ethnicity and what not, I say they're very accurate and the best company to test with, as Polako said, their information is accurate but the way they interpret things sometimes can make you confused (For instance the fact that middle easterners tend to be closer to South Europeans rather than Near Easterners is misleading because they lack reference populations from the middle east).

It's usually up to you to figure things out, how? By adding many people as possible and see who you relate to the most, check out some of the results here, they don't lie, besides, you'll get to find relatives so that's pretty cool too.

Go for it, it's worth the money.