Today, 23andMe is pleased to announce that we have received institutional review board (IRB) approval for our research protocol and an accompanying revised Consent Document. This approval reaffirms that all 23andMe research efforts intended for publication protect the interests of our customers. Our absolute commitment to privacy has not changed.
An IRB is an independent panel charged with ensuring that every step of a study’s protocol follows federal guidelines on research protections for human subjects. IRB approval is required when individuals directly interact with researchers and/or individual, identifying information is made visible to researchers or third parties.
Because the 23andMe protocol excludes individual identifying information (e.g. name, email address, user ID, Password, payment information, etc.) and our analysts do not interact directly with customers during data collection, our research technically does not require IRB review. This would be true even if the federal government funded our work.
While IRB approval is not required, we sought IRB approval for our research protocols and customer consent language to ensure that our work is in line with scientific research best practices. This has taken some time because 23andMe’s innovative new model of research was not originally anticipated by traditional IRB guidelines.
So what has changed?
The new IRB-approved consent process lets customers use our service and access their own data, regardless of whether or not they want to be part of research that will be published in a peer-reviewed scientific journal. Previously, customers opted into this research by purchasing our service, then completing and submitting surveys. Now, however, customers must explicitly choose to allow their genetic and survey data (in an aggregated and de-identified form, as always) to be used in published research.
What hasn’t changed:
23andMe remains committed to furthering personalized medicine. As such, we use data from all customers (including those who have not consented to be part of published studies) for company research aimed at making new discoveries and developing new features and products. This research is not intended for publication and is sometimes undertaken in association with our partners. We believe consumer-driven research will lead to significant findings that will benefit us all in the future.
Visit the 23andMe website to read the full Consent Document, as well as updated versions of the Terms of Service and Privacy Statement.
23andme has always been quite clear that they would want to use medical results, surveys and information we provide for research studies. I for one am happy to help in whatever small way my results further the medical statistics.
I think the 23andMe use of surveys combined with genetic information will speed up the pace of medical research enormously. I’m happy to participate.
I also am happy that you can use my genetic material to make breakthroughs in science.
Only one thing troubles me: I think I gave information that belonged to my mother in the space labeled Maternal Grandmother. I wish I could fix it.
I’m happy to be a part of this research and hope that 23 And Me will help find a cure for Parkinson’s Disease!!
I am anxious for the genetic information about my ancestors. I gladly participate.
Thank You.
This is wonderful that i might help someone like me through genetic. Thanke you for giving me this chance.
I am happy to participate and give my consent.
I am happy to be a part of this project and give my consent to publish any data
Please use my information. Glad to help
I will more than happy to participate.
Jerry
It’s a good idea.
Hopefully with all the research 23and ME is doing, results will show how we can stay healthy longer!