The Heart of Genetic Counseling: Past, Present and Future

This year, the National Society of Genetic Counselors has the pleasure of celebrating 40 years of advocacy, education and ingenuity in the genetic counseling world, not only advancing the profession but positioning genetic counselors as necessary members of the healthcare industry.

Reflecting on where NSGC and the genetic counseling field is today and how it came to be, this year’s conference attendees heard from three former presidents, all sharing their perspective on how the field has evolved in just four decades. Their speeches focused on the past, present and future of the genetic counseling profession and how far genetic counselors have come as invaluable members of the healthcare team.

Past

In the early years of genetic counseling, few knew what a genetic counselor was and the role of the genetic counselor in the healthcare industry was being defined. There were vigorous discussions about use of the title “genetic counselor” and whether to establish a professional society.  Past President Wendy Uhlmann, MS, CGC (1999-2000), remembers that in the early 1980’s generally clinical geneticists considered themselves to be the genetic counselors, and those with masters degrees “genetic associates.”

Uhlmann quoted a 1989 Perspectives in Genetic Counseling article written by Joan Marks, MS, an early longtime director of the Sarah Lawrence College genetic counseling program. Marks said at the start, many in the medical community had “serious doubts that non-physician counselors could be trusted to know their limitations” and there was even “open skepticism that dealing with the emotional component of genetic diseases was either necessary or constructive” (Fall issue, Vol 11, No 3, page 2)

“This was clearly disproven,” said Uhlmann, referencing the milestone of reaching 5,000 certified genetic counselors (CGC) this fall.

Another limitation: technology. Computers were either nonexistent or newly in use and there were no online searches or even much DNA testing. In the hour-long clinic visits, genetic counselors would review family histories, draw pedigrees and provide inheritance and psychosocial counseling. Generally, genetic counselors did not work autonomously, and their roles weren’t clearly defined, either.

 “We had to figure out and define our roles for ourselves, the physicians we worked with and our patients,” said Uhlmann. “We advanced our roles by demonstrating our knowledge and value and by asking to do more.”  

With the start of the National Society of Genetic Counselors in 1979, there was finally a forum for genetic counselors to discuss their roles and share successes and challenges. Members, who paid just $20 a year in dues, used the annual meeting as a forum for discussion of what they were doing in their positions. It inspired them to take on new roles and expand into new areas, like cancer genetics.

In the early years, genetic counselors and geneticists took the same American Board of Medical Genetics boards which were offered every three years in just a few cities. This changed in 1993, when the American Board of Genetic Counseling was established.

Present

In September, NSGC announced that the number of certified genetic counselors had grown to include more than 5,000 – no small feat for a profession that had to define its own role in the healthcare industry.

NSGC Past President Jen Hoskovec, MS, CGC (2014) says there’s been a rapid expansion in the clinical practice, roles and responsibilities of genetic counselors today as genetics is increasingly being recognized as a subspecialty of nearly every medical specialty. Added to that, more and more genetic counselors are taking their talents outside of their historical scope of practice, which is making a big impact in the healthcare world and beyond.

“Every genetic counselor has the opportunity to impact those around them, whether its healthcare providers, educators, patients, policy makers, insurers, students or the general public, and that to me, is the incredible reach of being 5,000 certified genetic counselors strong,” said Hoskovec.

It is also an exciting time for the National Society of Genetic Counselors, as the organization is primed for productivity with more than 70% of members who are younger than the organization. Drawing on the experiences of those who have gone before, this younger generation of genetic counselors uses NSGC for the collaboration, grassroot efforts and creativity that continues to ensure that they have a “seat at the table.”

There’s a laser-like focus on advocacy to those outside the profession but also internally. In the 2019-2021 NSGC Strategic Plan, the board outlined an important initiative focused on diversity and building a culture of inclusion.

“These member-focused goals, aimed at celebrating diversity and community building are essential to our continued success and make me proud to be both a genetic counselor and a member of NSGC,” said Hoskovec.

Future

In stark comparison to Wendy’s description of the early years of genetic counseling (no computers, no internet and barely any DNA tests!), NSGC Past President Mary Freivogel, MS, CGC (2017) revealed there is a new player that is already making its mark on the genetics industry: artificial intelligence.

Artificial intelligence (AI) can collect relevant personal and family history, it develops a differential diagnosis, delivers personalized education to patients and even can provide a standard plan for medical management. One thing AI lacks? It lacks heart.

“AI cannot hear the fear in a patient’s voice, it cannot see the hurt in a patient’s eyes nor sense the tension in a patient’s body language. But genetic counselors can, and when we do, we are uniquely positioned to support and guide that patient in a way that no one else…or nothing else can,” said Freivogel.

Healthcare is shifting to provide more towards providing more to patients in less time, for less money, and with less human interaction.  AI seems to be key in helping with this goal. Although AI can be viewed as a threat by healthcare providers, Freivogel encourages genetic counselors to view it as a partner… with one very important caveat:

“Let’s leverage AI. Let’s allow it to help. But let’s remain in the driver’s seat and make it work for us, versus the other way around. If we fight AI, we run the risk of losing our position of power. Instead, let’s embrace it and be the ones to determine its’ scope and set its’ boundaries,” said Freivogel. 

Freivogel pointed out that genetic counselors are very lucky to have the word “counselor” in their job title, as counseling is something that AI explicitly cannot do. She predicted that NSGC will continue to support, encourage, engage and educate its members so that they are poised and ready to draw on their counseling skills in order to function at the top of their scope of practice. Just as the heart keeps human beings alive, it may be what allows the genetic counseling profession to grow, survive, and flourish in the future.

 

 

 

 

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