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Writer's pictureNira Johnson

Genetic Counseling and Testing Myths: How Many Have You Fallen For?

Updated: Oct 13, 2023

Debunking 10 Common Myths (Infographic at the end)


Reality Check Ahead - context image

Hey there, lovely readers! We made it to Friday!


As a genetic counselor for over a decade 😲🤫, I've seen my fair share of myths and misconceptions floating around about genetic counseling and genetic testing. Today, I thought it would be fun to tackle some of these myths. So, grab a pumpkin spice latte ☕ (or whatever treat suites you) and join me as we venture into the world of genetic counseling, where myths are scarier than ghosts! Join me on this myth-busting adventure, and by the end, you'll have the knowledge and humor to debunk these spooky genetic misconceptions at your next fall bonfire or pumpkin-carving party! 🍂🍁

And here's a treat for you: for those who read this post to the end, hidden in the text, I have an NSGC coupon for my Etsy shop to get in the spirit of annual conference coming up. But you'd have to hurry if you want your stuff to get to you before the conference (in LESS THAN 2 WEEKS).Share this post with your friends and family to spread the learning, humor and even the coupon!

Myth #1: Genetics is Destiny

BOO! Here's a spooky one that just won't go away. Many believe that if their genes spell out a certain condition, it's game over. Well, let me tell you, genetics isn't a crystal ball. While our genes can give us insights into our health risks, they certainly don't dictate our fate. It's more like a weather forecast than a death sentence. In fact, knowledge about our genetic makeup can be incredibly powerful. It can open up treatment and care paths that weren't available before testing, and it might even reveal that a treatment you're currently undergoing is unnecessary. So, let's unravel the mysteries of genetics together!

Myth #2: Genetic Counselors Predict the Future

Alright, while our vast knowledge and skill can be impressive, genetic counselors are certainly not fortune tellers! We provide science-backed information and support based on the best available data. One of our biggest goals is to empower you with knowledge so you can navigate your health journey with confidence. Understanding your genetic risks can be a game-changer when it comes to preventive care and wellness decisions.

Myth #3: Genetic Tests are Always Right

Now, this one's a real scream! Genetic tests can be pretty darn accurate, but they're not infallible. False positives and negatives happen, and understanding the nuances is crucial. Genetic counseling helps patients navigate these murky waters and interpret the results correctly. It's not just about the test result; it's about how that result fits into your overall health puzzle. So, don't let a single test result haunt your thoughts. Seek guidance, and you'll see the bigger picture.

Myth #4: Genetic Counseling is Only for the Seriously Ill

Nope, we're not just for the rarest of the rare cases. Genetic counseling is for anyone who wants to explore their genetic makeup and make informed decisions about their health. Whether it's planning for a family, addressing concerns of children showing signs and symptoms of certain conditions, assessing adult health risks (e.g. cancer, heart disease, psychiatric conditions, etc.), or just satisfying your curiosity, we're here for you. Knowledge is power, and understanding your genetics can be a proactive step towards a healthier and more informed you.

Myth #5: Gene Mutations Make You Uninsurable

Wrong. The Genetic Information Nondiscrimination Act (GINA), established in 2008, is your insurance policy against health insurance companies using genetic data to deny you coverage or hike up your rates. Rest assured, genetic information alone won't put you in the insurance penalty box. If you're considering genetic testing, a genetic counselor can provide you with comprehensive information and guidance to ease any concerns.

Myth #6: Genetic Counseling is Only Beneficial for Those Planning a Family/Pregnancy

A common misconception is that genetic counseling is solely for prospective parents, those trying to conceive. While we do help with family planning, our services are far more diverse. We assist individuals in understanding their genetic makeup, evaluating risks, and making informed decisions about their health, regardless of whether or not family planning is on the horizon. As I eluded to in myth #4, genetic counseling spans a wide spectrum of areas, including family planning, navigating the complex journey of childhood diagnosis, addressing adult genetics concerns and specializing in fields like Cystic Fibrosis, psychiatry, cardiovascular health and others. We even have non-patient-facing roles within laboratories and provider education and support.

Myth #7: Genetic Testing is Always Expensive / Always covered by Insurance

Another myth on both sides of the coin! Some believe genetic testing always breaks the bank, while others assume insurance covers everything. The reality is somewhere in between. Costs vary, and insurance coverage depends on many factors. But rest assured, there are options and assistance programs available.

Myth #8: All Genetic Mutations are Harmful

It's time to debunk the notion that all genetic mutations are bad news.

First of all, we no longer call them "mutations", for that reason. They are now referred to as "variants" or "genetic alterations".

Second, Evolution thrives on genetic changes, and many variations in our DNA have no negative impact on our health. Take lactase persistence, for example. Consider lactase persistence, where a genetic variant allows continuous lactase production, enabling dairy consumption without issues. So, while some genetic variants can indeed lead to health concerns, others are harmless or even beneficial. It's like having a unique accessory that sets you apart in the genetic fashion show of life. So, don't be too quick to judge those variants; they might just be your genetic bling!

Myth #9: Genetic Testing Violates Privacy

Privacy concerns in the age of genetic testing are as common as selfies at a family reunion. But fear not! Genetic counselors and reputable genetic testing companies prioritize your privacy. They are like the bouncers at the VIP section of the DNA club, limiting access by following ethical guidelines and regulations along with complex security measures that are there in order to safeguard your data.

Also, you have control over who has accesses your genetic information. You can choose to keep it private, share it with specific healthcare providers, or even donate it to research initiatives.

So, while privacy worries are real, the responsible players in genetic testing take data protection seriously. Your genetic insights are safe and sound, ensuring you can enjoy the benefits of testing without compromising your privacy.

Myth #10: You Need a Referral for Genetic Counseling

Don't be fooled by this one! You don't always need a referral to see a genetic counselor. A golden ticket or secret handshake are not necessary. Many genetic counselors offer direct access to their care. Whether you're curious about your family history, want to explore your genetic makeup, or have specific health worries, you can reach out directly to a genetic counselor. We're just a call or click away, and we're excited to help you navigate your genetic journey. So, toss that referral myth out the window and reach out whenever you're ready to explore the fascinating world of genetics! 🦸‍♂️🔬🌟


** Important note: While referrals aren't necessary, it's beneficial to check insurance coverage if you want to avoid any surprise bills.

So, here are some questions for you - I would LOVE to hear your answers

  • Have you ever been told you're destined to follow in your family's health footsteps? What if I told you that you can change that narrative?

  • Have you had a genetic test? Did the results match your expectations? How did you feel about it?

  • Do you want a discount to my Etsy Store? Use code: NSGC2023 at checkout to get 20% off of your entire purchase (t-shirts, artwork, mousepad, notebook, maybe even a holiday gift…).

  • Have you ever met someone who thinks genetic counselors are part psychic? How would you clarify our role to them?

  • What's your genetic counseling "aha" moment? Why did you decide to explore your genetics?

Okay, enough myth-busting for today, but remember, genetics doesn't have to be scary. It's a fascinating field full of discoveries, hope, and the occasional chuckle. So, don't let these myths haunt your understanding of genetic counseling. We're here to guide you, debunk the scary stories, and help you take control of your health.

For more information on genetic counseling and/or to find a local or remote genetic counselor, visit the National Society of Genetic Counselors (NSGC) web page.

Thanks for joining me on this fun and enlightening journey through genetic counseling myths.


Until next time, stay curious and keep those genetic myths at bay! 👻✨


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Infographic summarizing the article - debunking common myths about genetic counseling and testing.
Debunking 10 common myths about genetic counseling and testing

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