The National Society of Genetic Counselors (NSGC), which is celebrating its 40th year, advances the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services. The annual NSGC conference is a valuable event to discover current challenges that genetic counselors face in their various day to day roles as well as discuss with other genetic counselor leaders and innovators strategies for improving access to genetic counseling services. As the largest independent provider of telegenetic counseling services, we consider these as we help our clients to ensure the best care for patients, as well as consider how we can help facilitate collaboration between the different stakeholders in personalized and genomic health care.

From the recently held 38th Annual Conference for the National Society of Genetic Counselors, InformedDNA staff who attended offer some observations and insights.

Genetic counseling roles are becoming more diverse

There are now more than 5,000 genetic counselors certified by the American Board of Genetic Counseling (ABGC) and more than 50 educational master’s programs. With this growth comes an increase in genetic counselors serving in more diverse roles. For example, more genetic counselors are serving in advisory roles with health plans, product management, clinical trials, etc. This diversity of roles adds to the challenges that health systems and hospitals are experiencing in keeping clinical genetic counselors on their day-to-day clinical staff.

With the increase in genetic tests to inform personalized medicine, it is more important than ever to reduce the barriers to genetic counseling access in order to prevent a flood of misuse of genetic technology and information. And, as observed during the recent NSGC annual conference, there is so much passion for what genetic counselors do and how they do it. It’s amazing to realize what a huge part that genetic counselors play in the future of personalized medicine.

Delivery of genetic counseling services is evolving

The high demand for genetic counselors means that, as an industry, we need to think of ways to better triage patients to determine who needs what type of genetic counseling, if any. Leveraging technology, such as artificial intelligence, enables genetic counselors to use their expertise to the fullest during sessions with patients. No matter how AI tools are used, the human response offered by genetic counselors – the empathy and ability to support patients throughout the decision-making process – will always be needed. While the educational aspect of the patient session is very important, it is the ability for genetic counselors to support patients in determining their personal comfort and best course of action that will continue to be valuable. For this reason, genetic counselors should be instrumental in driving AI educational content, when employed.

Another observation was around the seemingly huge divide between genetic counselors in rural and urban environments. Those in smaller, rural settings aren’t as likely to have the support and funding to establish helpful AI-based screening services. Genetic counseling services provided by large, academic institutions are, at present, more technologically advanced as compared to those offered in low-resource areas or areas where a genetic counselor is the only resource and does not have the required level of funding and support.

As patient-initiated tests increase, so does the need for genetic counselors

Providers report that the genetic counseling role will become more critical as a post-genetic test service, however, most agree that informed consent is critical for the patient. This is also the case for patient-initiated (i.e., direct-to-consumer (DTC)) genetic testing, as more patients are anticipated to obtain results without genetic counselor involvement and need assistance with results interpretation. With that in mind, it is even more important for genetic counselors to be involved in conversations with healthcare providers to either better educate them, motivate them to refer to genetic counselors, or utilize AI to help guide patients’ decision-making prior to genetic testing.

Some information about DTC testing can be quite disturbing to genetic counselors. The primary concern is limited testing of mutations when, perhaps, thousands are known. In one case cited during a NSGC conference presentation regarding testing for Familial Hypercholesterolemia (FH), only 24 variants of more than 2,000 were being tested. And, of more than 2,000 individuals tested, there was a false negative rate of 68 percent. This means that many people who thought they had negative testing actually did have genetic risk.

Regardless of the role that each of InformedDNA’s genetic counselors serve, they honor an engrained value of our company, which is to consistently provide the best patient experience and care. We leverage the expertise of the largest, most experienced, full-time staff of lab-independent, board-certified genetics specialists in the U.S. to help ensure that health plans, health systems, hospitals, pharmaceutical companies, clinicians and patients all have access to the highest quality genetic services.

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