This Friday, I’ll have the honor of speaking in front of nearly 1,000 of genetic counselors at the annual National Society of Genetic Counselors conference in San Diego. My plenary session is entitled “5 Things Genetic Counselors Need to Know About Previvors.” I’m excited and honored to participate in this important event.
Ever since my book, Previvors, came out last year I’ve been speaking nationwide to women and men about their cancer risk. I usually address risk factors, red flags, and all the statistics related to BRCA mutations, surveillance options, and the latest in prophylactic surgeries. But the genetic counselors already know all of this. In fact, many of them helped me decipher this critical information when I was first writing my book.
That’s why I’m shifting gears.
Because while my book includes the medical facts and information that previvors need to know, it also includes the stories of Lisa, Mayde, Amy, Rori, and Suzanne. And these anecdotes, these real-life experiences really convey to previvors—as well as their genetic counselors and doctors—all of the medical, emotional, and psychological issues that a person with a high risk for cancer might face.
So, this Friday I’ll be sharing the perspective of the patients based on my interviews with these five women and through speaking with countless previvors at other speaking engagements and conferences throughout the country. I’ll explain what it is, exactly, that previvors say they need from their genetic counselors.
For the record, I am a huge proponent of genetic counseling, as are many other advocates for previvors. For instance, Sue Friedman, founder and director of FORCE, said in my book, “Genetics is a complicated, constantly evolving field, and it can be very difficult for a person to get a clear understanding of their risk unless they have input from a specialist in that area.” In other words, a board-certified genetic expert can provide previvors with accurate up-to-date information about their risk, help them with the psycholgocial repercussions of knowing it, and explain all options so they can make informed decisions regarding what to do about it. The danger of making such decisions in “a vacuum,” as Friedman puts it, is that women may make potentially life-altering choices based on false information or data they don’t completely understand.
It’s clear that previvors need genetic counselors. And through my speech to these counselors on Friday, I hope to help them make the most of their vital relationship with their patients.