Personal Access to Genetic Information

Alberto Gutierrez, Ph.D., FDA, Director, Fax: 1-301-847-8514
Elizabeth Mansfield, Ph.D., FDA, Senior Genomics and Personalized Medicine Advisor, Office of Invitro Diagnostic Device Evaluation and Safety, Fax: 1-301-847-8514
Rep. Henry Waxman, US House of Representatives, Chairman of the House Committee on Energy and Commerce, Fax: 1-202-225-4099
President Obama, Fax: 1-202-456-2461

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
A scientist is someone -- anyone -- who asks questions and seeks answers. For the first time in history, we have the ability to look within ourselves, to read in detail the code of life, and understand better the tiny mechanisms that make up biology.
Professional scientists, academic labs, industry, and physicians have led us all on the first parts of this journey, but they are not the only expolorers, nor the only ones with questions to answer. The innovations that will drive our economy through the rest of the century will start with small businesses, independent citizen groups, and families with concerns about their heredity. In other words, with individuals.
President Obama sees this: "Continued research and development in the life sciences is essential to a brighter future for all people... "From cutting-edge academic institutes, to industrial research enters, to private laboratories in base ments and garages, progress is increasingly driven by innovation and open access to the insights and materials needed to advance individual initiatives."
In the spirit of citizen scientists like Thomas Jefferson and Benjamin Franklin, we seek the freedom to question. As you look at regulating the nascent consumer genomics industry, please take this into account, and don't shut off this flow of information as it is just getting started.
Thank you for your consideration, your time, and for the good work you do,
Raymond McCauleyResearch Fellow, Scientific Advisory Board DIYgenomics.org