Our most recent #genCSM Tweetchat this past Tuesday featured special guest 23andMe! Their Medical Affairs Team joined us for a genetic testing discussion including Altovise Ewing, Ph.D., LCGC, Stacey Detweiler, MS, LCGC, and Jeffrey Pollard, M.D.
23andMe answered questions about what they offer in genetic testing along with how they educate consumers and protect consumers’ data.
Check out some highlights from the conversation below and read the full official Tweetchat transcript here.
We are honored to have Altovise Ewing @23andMeResearch with us on #GenCSM today! #23andMe #genetics #BRCA #GenCSM pic.twitter.com/cV4ek5qw1d
— #GenCSM (@GenC_SM) June 19, 2018
Q1. 23andMe recently began again returning the 3 common Jewish BRCA mutations, with FDA permissions. What drove this decision? #23andMe #genetics #BRCA #GenCSM
— #GenCSM (@GenC_SM) June 19, 2018
A1j. Prior to FDA authorization, #23andMe observed that there were thousands of customers within the database who were carriers of 3 common Ashkenazi Jewish BRCA mutations. We felt an ethical imperative to return this information to these individuals #GenCSM
— 23andMe Research (@23andMeResearch) June 19, 2018
That happened with someone I know. She was surprised to find out she had Ashkenazi heritage, & the information was important to her clinical care. #GenCSM
— P. F. Anderson is recovering … slowly (@pfanderson) June 19, 2018
One of the biggest concerns in the patient community about the 23andMe BRCA product is that many consumers seem to believe they are having full BRCA testing, and don’t realize that they are only being tested for the 3 BRCA mutations common in people of Jewish ancestry.
Q2. What is 23andMe doing to ensure that consumers know the 23andMe #BRCA testing is only for the 3 common Jewish mutations? #23andMe #genetics #BRCA #GenCSM
— #GenCSM (@GenC_SM) June 19, 2018
A2c. Additionally, educational tutorials are available on our website that provide customers with definitions and key concepts. We also created a dedicated public “Do You Speak #BRCA” webpage: https://t.co/67xWjzKqXV #GenCSM #23andMe
— 23andMe Research (@23andMeResearch) June 19, 2018
#23andMe #genetics #BRCA #GenCSM pic.twitter.com/msRdctjksm
— #GenCSM (@GenC_SM) June 19, 2018
A3. We're always striving to deliver more results to our customers. Future reports will need to meet our own team's high standards for scientific and clinical validity, along with any applicable FDA and legal requirements #GenCSM #23andMe
— 23andMe Research (@23andMeResearch) June 19, 2018
Does #23andMe plan on testing for the #MostCommonHereditaryCancerSyndrome aka as #Lynchsyndrome in the future? #GenCSM
— Georgia (@_GeorgiaHurst) June 19, 2018
Q4. Can you discuss how #23andMe’s policy protects its consumer data, as compared to what happened with the Facebook data and now the My Heritage breach? #23andMe #genetics #BRCA #GenCSM
— #GenCSM (@GenC_SM) June 19, 2018
A4b. Customers can voluntarily participate in #23andMe Research by providing consent (~85% do so). Genetic Information and/or Self-Reported Information are de-identified and are not linked to identifying information like your name, email, or other Registration Information #GenCSM
— 23andMe Research (@23andMeResearch) June 19, 2018
Q5 The Golden State Killer case has left many consumers worried about their genetic #privacy. What, if any, barriers does 23andMe have in place for law enforcement to use its data? #23andMe #genetics #BRCA #GenCSM
— #GenCSM (@GenC_SM) June 19, 2018
A5c. To date, we have successfully challenged these requests and have not released any information to law enforcement. You can review our Transparency Report for more info: https://t.co/Ta5iL7VHW0 #GenCSM #23andMe
— 23andMe Research (@23andMeResearch) June 19, 2018
Looking forward to it! I'm a big fan of DTC genomics & open access to raw data, teach workshops for both public & faculty on these topics, because misunderstanding of what can be done & what is being done is rampant. #GenCSM
— P. F. Anderson is recovering … slowly (@pfanderson) June 19, 2018
#23andMe has demonstrated the accuracy of our genotyping assay & the test results provided in certain health reports through multiple, rigorous FDA reviews. In testing for these #BRCA variants, we achieved >99% accuracy threshold when compared to Sanger sequencing #GenCSM
— 23andMe Research (@23andMeResearch) June 19, 2018
will you append your marketing so people with family history of cancer know this?
— Ken Deutsch (@KDeutsch) June 19, 2018
#GenCSM is @MyGeneCounsel and @@BRCAresponder pic.twitter.com/MEYRsvwgtL
— #GenCSM (@GenC_SM) June 19, 2018
Don’t forget, these are only a few highlights of our chat, read the full transcript for more information. Stay tuned for our next #GenCSM Tweetchat by following us on Twitter: @GenC_CSM, @mygenecounsel, and @BRCAresponder!