Room for Improvement in Clinical Genetics

Last week marked my 10th anniversary of being a genetic counselor. To reflect on how far we’ve come, I wrote about what has changed in our field over the last decade. Though we’ve come a long way, we still have a ways to go. Here are 6 things about clinical genetics that still need some work:

1. There’s a shortage of genetic counselors

In 2017, the Genetic Counselor Workforce Working Group found that there aren’t enough GCs in the US to meet demand, even though the field has seen an 88% increase in growth over the last decade. They also predicted that, even with this rapid growth, we may not have enough GCs until 2030! This lack of personnel limits access to genetic services, especially in rural areas. 

2. We need more Genetic Counseling Programs

The shortage in GCs isn’t for lack of interested students. In 2019, over 1,500 students applied to the nearly 50 GC programs in the US and Canada, but only 464 got in. If we want to fix our GC shortage, we need to open more programs, and find ways to increase the number of students each program can train. 

3. Clinical Genetics has a diversity problem

People of European-decent are over represented in most genetic studies and databases. This drastically limits our understanding of genetic conditions in humans. Genetic tests performed on people of color are more likely to find inconclusive results (“variants of uncertain significance”). The only way we can reduce these inconclusive findings, is to study more diverse populations!

4. Genetic counselors are in need of more diversity, too

According to the 2019 Professional Status Survey administered by NSGC, 95% of genetic counselors are women, and 90% are white/caucasian. Creating a more diverse and inclusive environment for all groups within our ranks is important for both our growth as a profession and the patients we serve. The more we can learn from each other, the more culturally sensitive and competent we will be for all of our patients. 

5. Insurance coverage is still an issue

While we have made great strides in gaining coverage for genetic consultations and testing, coverage gaps still exist. Insurance coverage is still a significant factor in determining whether a patient obtains the testing they need, and many GCs spend an awful lot of time trying to make sure testing gets covered. 

6. There’s still a lot we don’t understand about the human genome

From variants we have trouble classifying, to changes we can’t easily detect with current technology, there is still a lot in the genome that is beyond our reach. This is frustrating for patients and clinicians alike.

Despite all that, genetic counseling is still the best job around (I may be a bit biased here). With excellent job growth, and a diverse, ever-changing range of work settings, genetic counselors have the ability to use their passion in so many different ways. Whether in the clinic, the lab, research studies, or universities, GCs are there making a difference in people’s lives. I can’t wait to see the strides we make in the next 10 years. 🦸‍♀️🧬🦸‍♂️