Last evening (Tuesday March 18, 2014) the Northwest Association for Biomedical Research (NWABR) hosted a Community Conversation that explored the issues around Direct-To-Consumer Genetic Testing.
These Community Conversations are a partnership between NWABR and the Institute for Translational Health Sciences at the University of Washington. The purpose of these Community Conversations is to enable members of the public to become engaged with emerging issues in the bioscience realm. Our hope is that an engaged public will be better placed to think through complex scientific and ethical issues, make informed contributions, build relations with experts in the field – and most importantly – provide those same experts with feedback from a community perspective on these issues.
At the Community Conversation hosted yesterday evening around 35 people gathered to discuss direct-to-consumer genetic testing services. The company 23andMe has been providing this service to customers and approximately 650,000 people have both had their DNA tested and agreed to share their records to help build a DNA database that will, hopefully, in the future improve the accuracy of the findings that 23andMe can report to their customers.
The FDA has asked 23andMe to stop marketing the health benefits of this testing service and to no longer provide direct findings to customers about any health implications arising from the genetic tests that they perform. The FDA is concerned that a consumer may misinterpret the results that they receive from 23andMe and subsequently make poorly informed health care decisions.
Yesterday’s Community Conversation was held at Kakao Chocolate + Coffee in Westlake. The Conversation was facilitated by Sarah Nelson and Lorelei Walker, who are MPH and PhD candidates in Public Health Genetics at the University of Washington. Following the presentations from Ms. Nelson and Ms. Walker the participants had a wide ranging discussion that touched on: privacy, trust, potential commercializing of DNA, the need for access to this information. the need for help in interpreting the information, resistance from some members of the medical community, the current lack of diversity in the 23andMe database, support for and frustration with the FDA and much more.
As we the staff at NWABR watched the conversation progress we were amazed that such a great group had come out on a Tuesday evening, given up their own time, and dived so eagerly into this complex area. We were again reminded of just how rich discussions can be when these two sometimes diverse worlds come together.
Regards
Ken Gordon
Executive Director
Northwest Association for Biomedical Research
Thank Research! 