Thursday, March 8, 2018

An open letter to Anne Wojcicki, CEO and Co-Founder, 23andMe

Amy Byer Shainman

Dear Anne,

I don't need a job, but you probably need to hire me. 

In response to your recent blogpost and news. Your company 23andMe has received FDA authorization to report on three variants in the BRCA1 and BRCA2 genes associated with increased risk for breast, ovarian, and prostate cancer. Yes, these variants are most common in people of Ashkenazi Jewish descent. As an advocate for those with BRCA and hereditary cancer, what has caused ME sleepless nights is worrying about the many current 23andMe customers who: 
1) have a BRCA mutation other than the three which you are offering testing as there are thousands of BRCA mutations as well as at least 50 different hereditary cancer syndromes.
2) get a "negative" BRCA test result under your test and now either think they are in the "clear" or now have a false sense of security about their cancer risk 3) get a positive BRCA test result under your test and have no clue of what to do next Many people fall through the cracks with a screening system that may be leaving them unaware of their risk. Genetic testing results, positive or negative is intricate, nuanced, and not black and white. I was the one on the 23andMe message boards years ago doing damage control as people did not understand the limited scope of 23andme's BRCA testing. As an advocate in the trenches, I am continually picking up the pieces of genetic testing messes. Yes, "studies have found women falling through gaps in breast cancer screening." Now people will fall through the gaps with the 23andme BRCA testing. In her 2015 recommendation for broader screening, geneticist Mary-Claire King, Ph.D., said, “Every breast cancer patient we identify after she develops cancer represents a missed opportunity for prevention.”

Yes, agreed, and to help avoid this, 23andMe can act responsibly by implementing these suggestions: 
1) An easily accessible page on your website dedicated to BRCA and hereditary cancer created by a certified genetic counselor. 2) Employ certified genetic counselors solely for the reason to answer questions on your message boards, and for your customers. 3) Next to a consumer's "BRCA" result, negative or positive, LINK to the BRCA page on your website created by a certified genetic counselor. I politely urge you to think about this, and please act responsibly. If you believe people have the right to know about this risk, if they choose, please take care of your customers by giving them a clear way to understand what the testing you are offering means and doesn't mean.

In truth, I am okay with you not hiring me, but please consider my suggestions. If you think it's "a failure" that people are unaware of their heightened genetic risk for breast and ovarian cancer until a doctor diagnoses them with cancer, then you will take these suggestions seriously, and act responsibly. Thank you. In health,

Amy Byer Shainman The BRCA Responder Advocate for those with BRCA and other hereditary cancer syndromes BRCA1 mutation carrier Executive Producer - Pink & Blue: Colors of Hereditary Cancer


Tuesday, October 17, 2017

Palm Beach Post - October 17, 2017