Just a few years ago there was no way for people to get comprehensive genetic information about themselves. By helping people access and interpret their own genetic data, 23andMe is at the forefront of a revolution that is making that possible. We recognize that this revolution raises difficult issues that may push the boundaries of the current policy landscape, and we welcome discussion of these issues. Below we offer our perspectives on three key topics in personalized genetics:
Direct-to-Consumer Genetic Testing
Some argue it is too early to make personalized genetic information directly available to consumers, contending that the level of public understanding has not matured to the point that most people are able to understand their results, and that genetic associations discovered to-date have little actual significance.
23andMe believes people have the right to access their personal genetic information. Genetic information is a fundamental element of a person’s body, identity and individuality. As such, the rights that people enjoy with regard to financial, medical and other forms of personal information should apply to genetic information as well.
We believe our customers are capable of understanding the context of the information we provide them. We also think the benefits our customers accrue in accessing their genetic information outweigh potential risks.
We believe providing genetic educational material is part of our responsibility. We actively look to work with other groups to create new educational tools.
Privacy has become a subject of debate in today’s information age. We recognize that genetic information is sensitive for many people. We believe all efforts must be made to guarantee individuals complete control over access to their genetic information.
We believe the potential benefits of sharing genetic information outweigh the privacy risks. 23andMe believes that by enabling its members to share their data, we are providing them a beneficial feature they want and are entitled to have as custodians of their own genetic information.
23andMe employs robust, multi-layered encryption and authentication methods and conducts regular audits of our methods to protect against unauthorized access to our systems. We also employ software, hardware and physical security measures to prevent unauthorized access to the computers where we store customer data.
We believe that individuals should be protected against genetic discrimination. As part of the Genetic Alliance, we supported passage of the Genetic Information Nondiscrimination Act (GINA) in the United States, which President Bush signed into law on May 21, 2008. However, genetic anti-discrimination laws vary from state to state and from country to country. Some, but not all, jurisdictions have laws that protect individuals with regard to their genetic information. We encourage our customers to understand the extent of legal protection for their genetic information before they share it with anyone.
Additional Links and Resources
We recognize there are no easy answers to many of these issues. 23andMe hopes to encourage debate and discussion about these and other topics. For more information, please consult the following websites: