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Connecting Genetics and the Digital World: Is Social Media the Right Path for Genetic Counselors?


Illustration showing social media and science icons woven together. Text says "Education through social media"

Hey y’all! Happiest of Fridays!

So, last week, I had the fantastic opportunity to attend the annual #NSGC (National Society of Genetic Counselors) annual conference in Chicago, after not being able to attend the conference for several years. This year, unlike most before, I attended a pre-conference session. The topic? Using social media as a powerful tool to educate patients and medical providers about #Genetics, #HereditaryRisks, #GeneticDisease, and how individuals can be proactive about their own health risks. Who would've thought our profession would find a home in the digital world, right? Dena Goldberg (#DenaDNA), Kira Dineen (#DNAToday), Matt Tschirgi, Izzy Kornblau, and Katie Lee Hornberger did SUCH a phenomenal job! Since I think there is a lot to consider around this topic, I thought it would be a great discussion for today’s blog. Let's dive in! Breaking Down Barriers As a genetic counselor (GC), I am always cautious about #SocialMedia platforms so, needless to say, I was a bit skeptical about it at first. It seems so much like a wild whirlpool of cat videos, political rants, memes that make you question humanity's intellect, and an endless parade of selfies where the misinformation spreads faster than the latest conspiracy theory. But the reality is, social media can be an incredibly effective means of educating patients and providers. Did you know that 74.4% of US internet users actively seek health information online? Yep, that's right! And we can be the credible sources they turn to.

Fact: 74.4% of internet users actively look for health information online.

The Responsibilities We Bear


Educating through social media comes with great responsibility. We are not just sharing knowledge; we are guiding people through life-altering decisions and coaching those who provide medical care to our patients. The information we put out there has to be evidence-based, clear, and easily digestible. The stakes are high - our online presence could shape someone’s life-altering decisions. Whether it’s explaining a complex genetic condition in simple terms or simplifying the findings/summary of a recent research breakthrough, we must maintain the gold standard of #Ethical practice. After all, we're the experts in this field! The Ethical Tightrope In the realm of social media ethical issues are aplenty. Patient privacy and confidentiality are our top priorities and we're faced with quite the tightrope act. We've got these amazing success stories and real-life cases that are fantastic for education and we want to reach a wider crowd; however, we have to balance it with risks. Sharing these stories and helpful advice can really fire up inspiration, but if we are not careful, we might unintentionally reveal personal information. So, while social media can be a phenomenal tool for spreading accurate, evidence-based information, striking that balance between educating and respecting privacy is the tricky part of our journey in this digital world. The Pros and Cons Now, let’s weigh the pros and cons of using social media as GCs. On the positive side, social media offers us the power to reach a wide and diverse audience. We can provide information instantaneously, making complex concepts more digestible to people. Also, engaging with our peers allows us to stay up-to-date with the latest #GeneticAdvancements, which, in turn, fosters a thriving community of learning. However, there’s a flip side to the coin. Misinformation spreads online very quickly, and our presence may inadvertently contribute to the noise. Handling negativity and criticism, whether from internet trolls or well-intentioned critics, can be emotionally taxing. Yet, with vigilance, resilience, and a touch of humor, we can combat these challenges effectively.

Some suggestions on how to handle online negativity and criticism: 1 | 2 | 3

Should GCs Utilize Social Media for Mass Education?


The decision to utilize social media to educate is a personal one, and GCs must weigh the benefits and challenges carefully. The potential to positively impact the lives of many is clear, but the responsibility is equally weighty. When used responsibly and ethically, social media can be a powerful tool for GCs to educate, raise awareness, and support the dissemination of accurate genetic information. The GC community can collectively contribute to drowning out misinformation and ensuring that credible voices guide those seeking information about genetics.


So, should GCs utilize social media for mass education? The answer, it seems, is a "yes," as long as they do so with the highest ethical standards and a deep commitment to the well-being of those they aim to educate.


GCs Unite! One of the beautiful aspects of the NSGC conference every single year is how we, as GCs, come together to support each other in this endeavor. We saw it this year in several ways, like the Q&A session with Ericka Hart, which was originally cancelled by NSGC and GCs came together to make it still happen outside of the regularly scheduled sessions. We are a strong and supportive group of people, we always have been. We have a unique perspective, and by sharing our insights, we can collectively raise awareness and educate. Help genetic counselors populate frequently on social media and drown out misinformation. Join various GC social groups, follow GC pages on social media, participate in discussions, and encourage each other to keep spreading accurate and insightful genetic information! So, fellow GCs, embrace the power of social media. Whether you're posting about the wonders of DNA on LinkedIn, sharing informative videos on Instagram an TikTok, or engaging in meaningful discussions on Facebook groups, your online presence really does make a difference. Just remember, a little humor and a lot of professionalism go a long way. In the end, it's all about ensuring that when our patients and providers hit "search" on their screens, they find credible, compassionate voices, ready to guide them through the fascinating world of genetics. Together, we can use social media to transform our profession and make a lasting impact. Stay curious, stay informed, and stay awesome, my fellow GCs! And don’t forget to follow and support me on social media as well (links in my signature below). 🧬💻👨‍⚕️ #GeneticCounseling #SocialMediaEducation Until next time, have fun educating the world, and be sure to keep supporting your fellow GCs trying to do the same thing! Nira

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Nira Johnson

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