Though it might be hard to believe, at 23andMe we do more than just extract DNA from strawberries and run a world-class Personal Genome Service. We also advocate on important issues of genetic policy. On July 10-13, members of 23andMe will be in Washington, D.C. for the annual Genetic Alliance conference.
The Genetic Alliance was founded in 1986 as an umbrella organization for different disease advocacy groups. Today, Genetic Alliance focuses on five areas of public policy:
- Genetic discrimination
- Genetic testing
- Open access to NIH-funded research
- Newborn screening
- Stem cell research
23andMe is closely aligned with Genetic Alliance on these issues—but most especially the first two. At 23andMe, we believe that individuals have a right to keep their genetic data private; so we supported the Alliance’s advocacy of the Genetic Information Non-Discrimination Act (GINA), which protects U.S. citizens against insurance or employer discrimination based on genetic data. Thanks in part to Genetic Alliance’s efforts, GINA was passed and signed into law last April. On Thursday, 23andMe co-founder Linda Avey and I will participate in the Alliance’s Genetics Day on the Hill 2008, where we will continue to discuss important science and policy issues with legislators and their staff.
We at 23andMe also believe that individuals have a right to high-quality genetic data and their interpretation. Because of the recent flood of genome-wide association studies, regulatory bodies are finding challenges in dealing with the new types of genetic information increasingly available to consumers. One of our goals is to work with various stakeholder groups to reach a consensus on how to address these challenges. On July 13, 23andMe’s Senior Director of Research Joanna Mountain will represent 23andMe in a panel called “Direct to Consumer Genetic Testing: Revolution or Risk?”
So keep an eye on this space if you want a peek into the intersection of science and policy. I’ll be attending and blogging about several interesting workshops.