What does the future of genetic counseling look like? That’s up to you.

In years past, I’ve left the National Society of Genetic Counselors’ annual conference feeling invigorated and inspired. Talks fortified my knowledge of reproductive genetics and introduced me to different aspects of genomics. Yet, this year, I left feeling . . . 

Tired and disheartened.

For over two decades, I’ve had to explain what a genetic counselor is. This year, I needed more than a jolly-up. I know genetic counselors are amazing. But I want to hear someone say that outside of an auditorium full of them. 

Genetics is All. Over. The. Place. Why aren’t genetic counselors?

There was a lot of hype about the new CPT code, 96041, that will be implemented on January 1, 2025, to better reflect the work of genetic counselors. I’m not knocking it. A lot of people put a lot of work into that process and it is a step forward. How big of a step remains to be seen. But I can’t help but wonder how impactful it will be if, at the end of the day, people don’t know we exist. 

In the State of the Society Address, the 2025-2027 NSGC Strategic Plan was introduced. It consists of: 

• achieving competitive reimbursement for genetic counselors to improve patient access;

• advancing the role and recognition of genetic counselors as genomic experts; and 

• transforming the NSGC for the future to ensure sustainability and value for members. 

A great amount of detail was provided on the first point. And I suppose it can be argued that the first will lead to the second, and in turn the third. But I think it can also be argued that if the second point happened, the first would naturally follow suit. 

One of my roles at Stork Genetics is to answer questions from primary care doctors about genetics. Taken from real consults, their patients come to them asking: 

• for help interpreting their raw data. Which makes me wonder, Why are patients throwing their money away on these services yet not scheduling with genetic counselors?

• if they would recommend genetic testing based on their family history of cancer; and

• if mental health conditions are included on carrier screening.

Again, taken from real consults, doctors are asking me:

• what additional steps can be taken to see if the patient needs worked up for Osteogenesis Imperfecta

• what genetic testing would I recommend to assess a patient’s risk for Alzheimer’s disease; and

• if their six foot five patient should be screened for Marfan syndrome. I kid you not, this is a question I get at least once a month. I can’t help but wonder, What PR firm did Marfan syndrome use to get on the minds of every provider and can the genetic counseling profession hire them? 

To be clear, everyday-routine-care-have-an-annual-visit-because-you get-a-discount-on-your-insurance-or-need-a-flu-shot doctors are

 NOT genetic specialists. 

I’ll be honest. Of all my jobs, that one is my favorite. Even if a question comes in at nine o'clock at night, I will answer it because I end every response to their acute question with the tagline,

“That said, I would recommend that your patient talk with a [insert specialty here] genetic counselor. During that appointment, the genetic counselor will obtain a complete health history, perform a risk assessment, discuss the most appropriate genetic testing options (including their benefits and limitations), and then be able to review the results with the patient should they elect to pursue genetic testing.  A genetic counselor can be found at https://findageneticcounselor.nsgc.org/?reload=timezone.“

With every consultation, I get to educate one more person about the existence of genetic counselors. And each time I do, I feel a little less like a ghost in the healthcare system. 

So am I tired? A hundred percent. 

Am I disheartened? Yep.

Did I consider, as I walked around the conference in uncomfortable heels, putting genetic counseling on the back burner and opening a tennis shoe kiosk in the convention center? Absolutely. 

But will I throw in the towel? Not quite yet.

I attended a handful of talks that suggested the need to find “champions” for the genetic counselor profession. I disagree. We don’t tell our patients to find champions. We teach them how to advocate for themselves and then urge them to do so. Because No. One. Else. Will.

I encourage you to watch the State of the Society Address and to answer the NSGC call to reach out to payors and employees. But I also encourage every genetic counselor to continue to advocate for yourself, because in doing so you will be doing it for the profession. 

So, how can you advance the role and recognition of genetic counselors as genomic experts?

Talk about genetic counseling. Everywhere.

• At community health events

• On social media 

• On websites - yours or someone else’s

• In articles - about maternity, aging, child rearing, or wherever else potential patients may be

• With your own doctor- your PCP, OBGYN, pediatrician, therapist

• Among your network of allied health professionals, be it with doulas, occupational therapist, mental health therapists, chiropractors, and dieticians - they are all seeing the same patients you do

• At family and holiday dinners

• To targeted groups like a prenatal yoga class, 55+ community, or rare disease group

• At career day in your kiddo’s or elementary, middle, or high school.

And fellow genetic counselors, for the love of all that is good, refer to your private practice colleagues. We know you are swamped. Most of us have been in the trenches. Help us help you.