Last October, a breaking news story grabbed my attention. A woman in Oregon reportedly had her breasts and uterus removed because her genetic test results were misinterpreted. This unfortunate story resonated with me as a certified genetic counselor and someone who helps patients interpret the results of genetic tests. I’ve been writing about misinterpretation of genetic test results since 2010, and in 2014, I left my day job as the director of a cancer genetic counseling program to start a company to combat these problems.
For the next 24 hours I sat on the edge of my seat, checking my newsfeed for the big story in a major news outlet that would point out the obvious: that a certified genetic counselor should have been involved, and could have reduced the likelihood of this tragedy.
I sat. I waited. I hit refresh.
Coverage rolled in. The details of the case were elucidated. It appeared that a nurse practitioner and several physicians were involved, and that the patient did not see a genetic counselor. Okay, I thought, the commentaries can’t be far behind.
Finally! The commentaries in major news outlets started coming in: lessons learned, how this could be prevented. I dove in, eagerly, waiting to read about how a certified genetic counselor could have reduced the risk of this calamity. But then reality hit. The articles I read didn’t highlight the role a genetic counselor could have played in avoiding this medical misfortune. The closest I saw was in an article with a list of resources - genetic counselors were mentioned as #4.
I was disappointed. I was mad that the coverage of our role and our field was incomplete, at best. And then I realized that I was mostly angry at myself.
I had seen the case. I am an expert in this very area of cancer genetic counseling. Why hadn’t I written the commentary myself???
And that, my friends, is the point of my post. With National Hereditary Breast & Ovarian Cancer Week Sept. 30-Oct. 6, I am reminded just how important it is to get our message out. We, as genetic counselors, have the knowledge, the experience, and the communication skills to discuss our critical role in healthcare. The field of genomics is expanding, exploding, and we are central to this story, and how it evolves. We must be the leaders in these conversations. And if we aren’t invited to the party, we must crash it.
Sure, not every one of us can author a commentary in a major news outlet or be a guest on a major morning news show. But some of us can. And the rest of us can post it, retweet it, like it, comment on it, and share it everywhere. (Remember to use the hashtag “#GCChat” so other genetic counselors can see the news for themselves.) We can also present the case at our conferences, grand rounds, journal clubs, make it into an infographic, and bring it up every time we give a lecture or speak at a career day about genetic counseling.
If you are interested in media relations, contact your local news outlets and offer yourself as a content expert in genetics. Soon, NSGC will provide a media toolkit in relation to Genetic Counselor Awareness Day with tips and resources for successful media outreach. Check the awareness day website for more information.
Genetic counselors are experts in genetic testing, genetic counseling, and genomics – but it is up to us to make our voices heard, even if we don’t receive an engraved invitation to do so.
I look forward to seeing you at the party. Save me a margarita.
Ellen Matloff, MS, CGC is CEO of My Gene Counsel, a digital genetic counseling company. She is part of the NSGC Digital Ambassador program and also a Forbes.com contributor on the topics of genetic counseling, testing and digital health.