[DIYbio] Re: Petition for Personal Access to Genetic Information

Raymond,
do you know if these laws changed? I can't find information specific
to this on 23andMe, though I know it used to be the case (with lots of
folks travelling outside of NY state to mail their kits back).

On Mon, May 31, 2010 at 1:12 PM, Raymond McCauley
<raymond@raymondmccauley.net> wrote:
> Congress recently started an investigation of direct-to-consumer
> genetic testing companies, including 23andMe, Navigenics, and Pathway
> Genomics.
>
> Some people in power take a paternalistic attitude that knowing about
> your own genes does more harm than good. Or that only a doctor or
> medical professional can decipher genetic information, and then spoon
> feed it to you.
>
> There is a possibility that services like this will be regulated out
> of existence, or become so expensive as to be unusable for people of
> average means. As examples: Already some gene sequencing services
> require a doctors prescription, or will only turn your data over to a
> doctor. If you live in New York State today, you can't legally get a
> 23andMe test. And most services are now restricting release of
> information to a few dozen variants out of the hundreds of thousands
> that can be tested, apparently for fear of liability.
>
> I work with a group of citizen scientists who are using personal gene
> scan information to build self-organized clinical trials, to look into
> the efficacy of OTC supplements and lifestyle on a variety of
> conditions. It would be devastating for these efforts to lose access
> to the results of cheap genetic testing.
>
> The petition is at
> http://www.thepetitionsite.com/1/mydna
>
> (I hope to have a link up on the DIYgenomics site to the petition
> soon.)
>
> The petition states:
>
> We, the undersigned, as makers, citizen scientists, and people with a
> spirit of curiosity:
> * Demand unrestricted access to our genetic information
> * Believe individuals have the right to seek out, purchase, and
> interpret their own genetic information
> * Don't want to be required to consult a doctor or genetic counselor
> before accessing our genetic information
> * Believe that people can make informed decisions about the
> usefulness, quality and actionability of genetic information
> * Think Direct-to-Consumer genetic testing companies are taking the
> first steps in getting relevant genetic information to a wide
> audience, and that burdensome regulation will stifle innovation in
> this field
> * Support legislation to ensure privacy and prevent discrimination
> based on genetic information
>
> Would you please support these goals?
>
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--
-Nathan

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