Newswise — Imagine finding out you have the genetic predisposition for cancer. Or Alzheimer’s. Or passing along a birth defect to your child. What would you do with this information?
Hopefully, you’d go see a genetic counselor, said Catherine Steding, assistant professor of biology at Indiana State University.
“Genetic testing is complicated. There’s a lot of data that is given to you, that (requires) someone to explain it to you and to help you really get through it. ‘I have a one in 5,000 chance of having a baby with this disorder.’ What does that really mean?
That’s where a genetic counselor comes into play,” Steding said.
The ability to sequence the human genome is technology that has developed only in the past couple of decades, so what to do with that information is an even newer proposition.
Indiana State student Hanna Brant launched an interdisciplinary research project to understand the role of genetic counselors in this rapidly developing field and whether telegenetics — virtual care and counseling — is used to close accessibility gaps for patients, especially in rural areas. The project is part of the Summer Undergraduate Research Experience and is sponsored by the Center for Genomic Advocacy at Indiana State, with an endorsement from the Rural Health Innovation Collaborative.
“(Genetic counselors) serve a very unique and a very important function, but how are they actually perceived in their broader community? Do we need to let physicians know this service is available and this group of people exists?” Steding said.
Brant, a senior political science major, started the project with a review of existing literature on the topic and then sent out two waves of surveys — first to Hoosier genetic counselors and then to regional critical-access hospitals. (Survey responses from the critical-access hospitals are still needed; for more information about participating, email ISU-GCSurvey@mail.indstate.edu.)
Most of the genetic counselors’ survey responses indicate they favor a more holistic approach to patient care.
“With the question of patient advocacy, there seems to be agreement or strong agreement — altogether 64 percent — that genetic counselors should be involved as more of a patient advocate, rather than in a more circumscribed role,” said Nathan Myers, assistant professor of political science. “They can go with the patient to meetings with their physician and make sure the patient is heard, that the patient isn’t influenced to do something they’re not comfortable with.”
With regard to the use of telegenetics, there’s an even split among genetic counselors, perhaps driven by the mix of rural and urban areas.
“There seems to be a reasonable amount of genetic counselors that use telegenetics, and there’s an equal amount that don’t. So, we’re trying to further investigate the factors that drive some to use it and some not to,” Myers said.
There’s also a learning curve for physicians and patients alike when it comes to what a genetic counselor does and the value they bring to health care, the survey found.
“From the perspective of genetic counselors, there are gaps in the genetic knowledge that physicians have, nurses have, other medical professionals have,” Myers said. “As genetic testing becomes more ingrained in the medical practice, that is going to become more and more of an issue.”
Even Brant, a native of Frankfort, wasn’t familiar with genetic counselors’ role before this research project, she said.
“It’s been really great to see how different academic research can be conducted and learning about something new that I wouldn’t probably think twice about until later in my life when I needed to seek out a genetic counselor,” Brant said. “It’s empowering in my own life and health to know this. It makes me feel more educated and aware.”
Brant, who hopes to continue with graduate school when the time comes, enjoyed bringing together two fields of research expertise with Steding (genetics) and Myers (political science), she said.
“This kind of research, even though it’s being conducted on a college campus by a student, it does have implications for people’s lives across the state … and beyond,” Myers said. “It’s good to know you’re engaged in something that does have that connection with people’s lives, and maybe in a small way, you’re helping to improve the profession.”
Myers is often asked what political science has to do with genomic advocacy, he said.
“If we’re successful, in five or 10 years down the road, people won’t be asking those types of questions. They’ll innately understand that genomics is an area that touches upon every aspect of our society,” Myers said.
Currently, there aren’t enough programs to fill the need for genetic counselors, Steding said. The faculty and staff at the Center for Genomic Advocacy are developing a master’s degree in genetic counseling for the university.
“Genetic counseling is a very science-heavy and very psychology-heavy field. So there’s counseling and then there’s genetics. You really have to be able to do both to be successful,” Steding said. “We’ve designed our program to fill a lot of the holes that exist out there, as well as provide unique training opportunities for students.”
Until the new curriculum is finalized and approved, Brant’s research project lays important groundwork for bringing together intellectuals who can cross academic specialties to develop good public policy or smart spending, Steding said.
“I like that we’re asking so many questions that directly deal with what genetic counselors should do, how it should interact with patients. Those have huge implications for the entire field, thusly for patients,” Steding said. “I really like what we’re doing.”