Rethinking Social Media Support Groups for Patients: A Genetic Counselor Mom’s Perspective

I have always considered myself a lurker when it comes to social media. Although I spend my downtime perusing Facebook groups for hot topics and trending issues, I try not to get involved in deep discussions or debates about parenting, politics, and the like. When it comes to medical advice, however, I always have a hard time. Someone will post a photo of their child’s rash in a mommy group, and there will be hundreds of comments ranging from, “it’s probably nothing” to, “go to the emergency room immediately!” There will be a handful of comments suggesting a visit to the child’s pediatrician, but most involve medical advice from non-medical mommies. The poster is desperate for help and she may make decisions based on misinformation. Such threads make me cringe.

In addition to being a genetic counselor, I am also the proud mom of a nine-year-old son who was born with a birth defect (clubfoot) and was later diagnosed with an unrelated genetic condition. A couple of years after his birth, I had a complicated pregnancy which we lost late in the second trimester. Throughout these experiences, I took on the burden of wearing two hats—genetic counselor and mommy.

My head was spinning with anxiety, statistics, treatment plans, and strategies for sharing the news. I felt isolated and needed support. I took the advice I give my own patients and joined virtual support groups. I was amazed to see thousands of others in the same boat; we were all scared and motivated to do everything possible to make things right for our children and ourselves. I felt I was in a safe space.

But after some time, I realized that these groups were not as safe as I had initially thought. I would see alarming pieces of medical advice, incorrect interpretations of genetic results, and serious mom-shaming. One member of my group recently wrote, “Remember parents, not all clubfoot cuties are the same. Some take different techniques, some take more time, some relapse, and some don't. Don’t stress out parents more than they already are. Some of you feel like you’re helping by sharing bad experiences and that's fine, but please refrain from telling parents they are getting wrong treatment…Let's stop shaming and be supportive. We are all in this together.” I could not have said it any better.

The problem is that I do not say it any better. Remember, I am a lurker, not a poster. I find myself staying quiet when I see concerning posts because I feel it is not my place to intervene. And once I start a comment with, “I am a genetic counselor…” I get bombarded with messages. I do not want to get involved on a professional level with strangers from around the world, especially those who may make medical decisions based on one comment from someone they have not met.

So here is my ethical dilemma. Should I keep quiet, or speak up? Should I educate the public, as is written in the NSGC Code of Ethics, or keep to myself for fear of creating a liability? I often struggle with these questions and consider leaving the groups. After all, ignorance is bliss, right?

While I don’t think I can ever know the “right” answers to my questions, one thing I do know is that I can make recommendations to my fellow genetic counselors. I propose that when we refer patients to support groups, we do so in a responsible way. We suggest they search for support through reputable disease organizations and websites, instead of social media. We advise patients that not all experiences are the same, and not all decisions are the same for everyone. We make ourselves available to answer questions, even if those questions come later. We reinforce to patients the positive value in commiserating with others, but also warn them about the dangers. We may not be able to control what people say on social media, but we can empower patients to responsibly navigate their sources of information and find the support they seek.