I am mad too. No one is forcing you to buy into services from 23andme and the likes. And I agree with Thomas Goetz. This is my data and it’s my decision. Regardless of what you think about the services and their utility or lack thereof, it’s ludicrous to think that doctors, most of whom know less about genetics than I do, need to make a call on this. It’s a personal decision. If a genetic test is required as a predictive indicator or prognostic, then it’s one thing, but that’s not the case here. There are ramifications for long term healthcare and behavior, admittedly ramifications we don’t quite have sufficient information to make sounds decisions on, but that shouldn’t stop me or you from sending our spit to 23andme if that’s what we choose.
If we really want to build a participatory healthcare system, then we need to let consumers gain some control of their own information. I am the first to admit that taking decision making away from physicians has a lot of risks. After all they are trained to make risk/benefit decisions, but spending some money to get yourself genotyped is something I’d like to be able to do on my own terms. What the data are used for is my decision. If there is a mandate saying that doctors need to be given access to such information, then it’s one thing, but you are not taking the tests to make immediate medical decisions. In fact, I’ve hoped that the software and material available on these sites will make more people aware of human genetics and how things work or don’t.
The personal genome project uses informed consent, but it’s a project that requires public sharing of data and that was a choice that needed to be made cause of the cost (free) and public sharing requirements. 23andme, etc are running a business and it’s their right to do so and our right to avail of the service as long as we know what we’re signing up for. That the business has long term medical potential due to the treasure trove of data that can be used in the drug development process is the icing on the cake.
I do not get mad often, but actions like these make me so. If you don’t like what the service offers, or think there is an issue with the information offered, why don’t you educate people about the issues and let them make an informed choice.
I do not get mad often, but actions like these make me so. If you don’t like what the service offers, or think there is an issue with the information offered, why don’t you educate people about the issues and let them make an informed choice. One doesn’t need Jedi powers to feel lobbyists at work in this whole mess.
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Technorati Tags: 23andme, Genetic Testing, Personal Rights
5 Comments
Yes, if there is a test that is misrepresenting information, then shut it down, but none of the big personal genetics companies are doing so. I actually find the tools they offer some of the better ones at helping people understand their genetics and genealogy in general
I agree that an individual has a right to their own genomic data (and should have total control over who has access to the data). They also have a right to know that an objective assessment of the data (as of 2008) indicates that the predictive power of the tests is only slightly better than reading their daily horoscope.
sjlm … completely agree.
Steve is so shooting himself in the foot here. Does he really think that the services of a genetic counselor will be needed less , if everyone is getting genotyped?
Of course, the pro-genotyping side made a similar mistake in the GINA legislation. Did it not occur to them that insurance companies would PAY people to get their genotypes read?
Steve is so shooting himself in the foot here. Does he really think that the services of a genetic counselor will be needed less , if everyone is getting genotyped?
Of course, the pro-genotyping side made a similar mistake in the GINA legislation. Did it not occur to them that insurance companies would PAY people to get their genotypes read?
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