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

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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