December 2013 – Pending an FDA decision, 23andMe no longer offers new customers access to health reports. Customers who received their health information prior to November 22, 2013 will still be able to see their health reports, but those who purchased after that time will only receive their ancestry information as well as access to their uninterpreted raw data.
23andMe is currently conducting an ongoing, web-based collaborative research study in accordance with established guidelines for genetic research. This IRB-approved study aims to understand how genetics influences human health and traits and incorporates genetic data provided by 23andMe customers along with their responses to online surveys. Participants may be general customers, or they may be recruited for specific research initiatives, such as our Parkinson’s and Sarcoma research projects. We believe our research discoveries will ultimately help researchers to develop new treatments for various diseases and conditions. These discoveries will also help people learn more about their personal health risks.
This general research effort is known as 23andMe Research. By completing surveys, forms, or other features you provide information that can help uncover the genetic roots of everything from serious conditions like Parkinson's disease to simple physical traits like being left-handed. Participating is as easy as giving consent for your data to be used in scientific research and then filling out one of our online surveys or Quick Questions marked with the 23andMe Research logo:
How does research through 23andMe work?
To participate in research, you can first give consent for your data to be used in scientific research and then provide us with information about yourself by taking one of our research surveys or answering Quick Questions. Our scientists then look for links between our customers' self-reported information and their genetics. Once uncovered, our scientists publish these discoveries in peer-reviewed scientific journals. We also announce our research findings on our website and explain how they apply to you personally, so that you can learn more about the information contained in your own DNA.
Why is genetic research valuable?
Genetic research can help identify individuals who are at a higher than average risk for certain diseases. By learning about their increased risk, these individuals can schedule earlier or more frequent screenings and make lifestyle changes to reduce their risk.
Genetic research also helps researchers understand the biological bases of certain diseases. Understanding how a disease develops can lead to novel therapies or treatments. For example, genetic markers associated with age-related macular degeneration (AMD) have revealed that inflammation plays a key role in this common cause of vision loss. Based on these findings, drug treatments that target inflammation are now being investigated for AMD.
Is 23andMe planning to publish their research findings?
Yes, 23andMe has published some of our findings in the article listed below. We also announce our research findings on our website and explain how they apply to you personally. Conducting and publishing scientific research can be a slow process. We believe that the 23andMe approach to research can accelerate this process.
Eriksson N et al. (2010) . "Web-based, Participant-driven Studies Yield Novel Genetic Associations for Common Traits" PLoS Genetics 6(6): e1000993.
How is the privacy of participants' research data protected?
23andMe takes seriously the trust you place in us. To prevent unauthorized access or disclosure, to maintain data accuracy, and to ensure the appropriate use of information, 23andMe uses a range of reasonable physical, technical, and administrative measures to safeguard your personal information, in accordance with current technological and industry standards.
23andMe research may involve collaboration with external parties; however, these external parties will only have access to pooled data stripped of identifying information. 23andMe will never release your individual-level data to any third party without asking for and receiving your explicit authorization to do so.
As part of our commitment to protecting the privacy of our research participants, we have also obtained a Certificate of Confidentiality from the U.S. Department of Health and Human Services. This certificate allows 23andMe to protect research participants’ data from involuntary disclosure, including subpoenas from federal, state, and local authorities.
23andMe research has received and is being conducted only with standard Institutional Review Board (IRB) approval of the final protocol. Any changes to the protocol must be first reviewed and approved by the IRB before being implemented. 23andMe's IRB is an Association for the Accreditation of Human Research Protection Programs (AAHRPP)-accredited company, Ethical and Independent Review Services, Inc. (Independence, MO and San Anselmo, CA).