By Heather Zierhut
The COVID-19 pandemic marked a turning point across the health care landscape, and like many professions, genetic counseling is evolving in unexpected ways. Genetic counselors are seeing many changes that they see shaping the future of the field, from access to technology to equity and more. As the National Society of Genetic Counselor’s (NSGC) President, I asked eight genetic counselors to share what changes they’re seeing and how they’re working to build a better future for the genetic counseling profession. Here are their thoughts.
Guiding patients toward the best care decisions
The future of genetic counseling is tied to our past. As genetic testing becomes more common in all areas of health care, the need for genetic counseling oversight for genetic testing and informed consent will dissipate. Genetic education and understanding will be taken on by chatbots and online resources. But, as studies have shown, patients benefit from guides. There has been an assumption that a genetic test will be all that is needed to inform and change behavior. Sociology suggests, however, that the best way to manage risk is to have a guide. Like guides in other areas (such as dieticians and mental health providers), there is a growing need for genetic health advisors. Genetic counselors are uniquely trained to meet patients where they are and guide them within the context of their life and cultural understanding. The future of genetic counseling is not in rare disease or diagnosis. The future is taking genetic information and counseling patients to have a better understanding of how to translate that information into making the best decisions about care that they can. The future is moving into primary care settings, at the point of contact, and will involve taking family history, genetic test results, and a patient’s unique experience and developing a plan that will guide the patient into the best outcomes possible. Harkening back to our roots, we will again need to rely on our counseling skills to effectively translate genetic testing results into life-changing reality. — Jason Flanagan, clinical associate professor, University of South Dakota
Shifting locations in the health care system
An important part of the future of the genetic counseling profession for me is thinking about where genetic counselors are located within the health care system. Historically, genetic counselors have been part of a specialized clinical genetics team within specialized clinics and large, academic medical centers. However, our profession has increasingly recognized the barriers to accessing genetics services that this model presents, and recognized that these barriers to access disproportionately affect marginalized groups. As we work toward delivering on our commitments to the principles of justice, equity, diversity, and inclusion in our delivery of services to our patients, we need to consider whether genetic counseling might be more optimally located within multidisciplinary primary care practice settings. Embedding genetic counselors within primary care practices could help reduce the barriers to accessing genetics services that are faced by marginalized groups, and potentially provide genetic counselors with greater autonomy and a greater sense of feeling valued. — Jehannine Austin, professor in the departments of psychiatry and medical genetics, University of British Columbia
Integrating genetic counselors to improve access
Genomic medicine is becoming increasingly relevant to standard medical care, from routine genetic screening during pregnancy to newborn screening at birth to cancer screening in adults. Expertise from genetics specialists is integral to the implementation of genomic medicine into routine care. Making increasingly complex genetic screening accessible, understandable, and actionable takes cooperation and collaboration from all stakeholders. Genetic counselors must educate policymakers on regional and national levels, teach future generations of health care providers, research the needs of diverse patient populations, and partner with advocacy groups to ensure this implementation is successful. — Blair Stevens, assistant professor and director of prenatal genetic counseling services, University of Texas Health Center
Advancing inclusion and reducing health disparities
To me, an important part of the future of genetic counseling is how we look at fundamental aspects of the field. For example, who are we inviting to the field, and who are we missing? Which of our patients are offered genetic testing, and which are not? Does that improve or worsen health disparities (even if that is current standard practice)? How are we delivering services, and who benefits from that? I know that these are big questions. But critically looking at things and thinking through them will enrich the genetic counseling profession, and ultimately, the care provided to patients. — Deepti Babu, NSGC president-elect
Emphasizing a collaborative approach to patient care
As barriers to accessing genetic testing fall, genetic counselors will become increasingly important partners and colleagues to other specialties in health care. Whether it’s genetic counselors interacting day-to-day with mental health care providers who are integrating genetic testing and results into their care of patients, with pharmacists who become more adept at understanding drug interactions and side effects, or with oncology (cancer) care professionals who find empowerment in the availability of genetic testing to prevent cancer instead of simply detecting and treating it, the collaborative approach to patient care will become an ingrained piece of the future of medicine. Genetic counselors who have strong communication skills coupled with deep understanding of genetics will be right there on the front lines. — Brianne Kirkpatrick, founder, Watershed DNA
Using technology to improve the patient experience
The genetic counseling profession has been rapidly evolving to meet people where they are. For decades genetic counseling was an in-person experience, and clients who didn’t live in a large metropolitan area often missed out on the benefit of meeting with a genetic counselor.
The alternative was to drive hours for appointments that probably seemed brief in comparison. Complex concepts had to be explained verbally, with pen and paper, or with flipbooks with illustrations that might be close, but not exactly right, for the client’s situation. Recent technological advances have allowed us to incorporate better illustrations and videos into our conversations, and we can provide counseling by phone and video. Online decision support tools and artificial intelligence chatbots have helped maximize the genetic counseling encounter by supplying routine information in advance of counseling, which allows the “in-person” session to focus on the more intricate concepts and psychosocial concerns. Our next innovation is just around the corner: virtual reality. Virtual reality allows for an immersive experience that we can tailor to each unique client in a way we can’t do today. Even better—we will be able to grow our profession more quickly, using virtual reality to augment and enhance the student clinical experience, allowing us to be able to train more genetic counselors to meet growing demand. — Trisha Brown, genomics and precision medicine program director, Aetna/CVS Health
Demonstrating the value of the profession
Genetic counselors love to learn. Not only do we have to pass many, many classes and exams to enter into the profession, but our field evolves so rapidly that we are studying and learning throughout our careers. In the future, it will become increasingly important for us to learn not only about science and medicine, but about business. Health care is a business, after all—there is no way to get away from the dollars and cents. If we want to sustain our growth as a profession and ensure that people can equitably access our services, we have to demonstrate the value we bring in a diverse array of work settings. Demonstrating our value requires us, as clinicians, researchers, educators, product specialists, or patient advocates, to have foundational knowledge in the business of health care. I hope that in the future we will have even more business education in genetic counseling graduate programs, at the NSGC Annual Conference and within our many genetic counseling communities. — Sara Riordan, vice president of clinical and research programs, Unified Patient Network
Accessing genetic counseling throughout a patient’s lifespan
Genetic counseling as a clinical service has mostly taken the approach of working with one patient, or one family, at a time, typically for one to a few visits. The future of genetic counseling will see a different approach that will include access to genetic counselors and our expertise in a multitude of continuous and comprehensive ways. Individuals will have their DNA dataset, including information such as carrier status (an asymptomatic, inherited variant that can cause a genetic condition), important for informed reproductive care), pharmacogenomics information for lifelong medication dosing and safety, polygenic scores for risk for common diseases, and highly penetrant risk variants for conditions including cancer and cardiovascular disease.
Across their lifespan, all people should be able to access genetic counseling services via their method of choice, whether it be via a smartphone app or an in-person visit at their local clinic. Genetic counselors will play a much larger role in delivering care across the full lifespan for the patients and families we serve, via smart apps we develop, and also through regular touchpoints in virtual or in-person lifelong care clinics, to make sure our patients have the most up-to-date information on risk management and surveillance recommendations, updated information that can be gleaned from their genome, and current knowledge on cutting-edge, groundbreaking treatments for genetic conditions. Much of this will be automated and formulated via artificial intelligence, so we can scale these services to the masses. However, there will always be a real intelligence genetic counselor that all patients can access via their chosen service delivery mode.— Amy Sturm, director of population health genomics, 23andMe
Heather Zierhut, PhD. MS, CGC (she/her) is the National Society of Genetic Counselors’ President and Director of the University of Minnesota’s Genetic Counseling Graduate program.