By Sue Loughlin
The Tribune-Star, Terre Haute, Ind.
WWR Article Summary (tl;dr) Genetic counseling is a rapidly growing profession, and demand is outpacing what current training programs can accommodate.
The Tribune-Star, Terre Haute, Ind.
Kassi Rains has wanted to be a genetic counselor since she was 15, and she’s pursuing her chosen career path at Indiana State University through its new master’s in genetic counseling program.
A genetic counselor provides information and support to individuals or families who have genetic disorders or may be at risk for inherited conditions. Patients might include a person worried about future cancer risks, or a couple concerned about the potential for having a child with birth defects.
Those seeking the services of a genetic counselor may be dealing with some difficult situations and decisions. For Rains, who received her bachelor’s degree in psychology at Indiana University, “That’s part of what appeals to me with this career — helping people through those really difficult situations.”
Indiana State is in its second year of offering the degree, which prepares students with training in genetics, genomics and psychological counseling.
“We often think of genetics as a single gene or small group of genes working together to code for some aspect of our health/development, while genomics is looking at all 20,000 genes at once and how they interact,” explained Megan Tucker, director of the genetic counseling graduate program.
The program now has 16 students, with eight new students accepted each year.
Genetic counseling is a rapidly growing profession, and demand is outpacing what current training programs can accommodate. Indiana State’s program was the 33rd accredited genetic counseling program in the U.S. and Canada.
Tucker noted that ISU’s second-year students, who are doing clinicals at sites across the country, are being recruited and “they’ll have their pick of the jobs.”
Indiana University also offers a genetic counseling graduate program at the IU School of Medicine.
Twenty years ago, the field focused on pediatrics and prenatal counseling. “Now, one of the leading areas where genetic counselors function is cancer clinics and cancer risk assessment,” Tucker said.
“We use genetic testing to try and identify families that may be at risk for inherited forms of cancers … so we can offer screening or diagnostic testing at younger ages,” with the goal of preventing or reducing the severity of a disease, she said. Genetic counseling and testing often involves breast, ovarian or colon cancer.
Cardiology is another area where genetic counselors are being used more and more. “A lot of major hospital systems have cardiac genetic counselors,” Tucker said. “We might be talking with families with arrhythmias, or cardiomyopathies or maybe even congenital heart defects … and assessing family members and who is at risk and what kind of treatment options do we have.”
Other growing specialties include neurology clinics and psychiatric counseling.
Genetic counselors also work in labs to help design testing. They serve as science/medical liaisons, reaching out to doctors offices to help them understand testing or interpret results. They also may work at insurance companies to help determine if something is it covered by insurance.
The master’s program combines science and psychology coursework, and in the second year, students travel to clinical rotations and take online courses.
The goal of genetic counseling “is to make sure patients are adapting to all of this complex science information … and helping them make a plan for themselves and their family,” Tucker said. The counselor will discuss options and identify resources to help patients make the decisions that are best for them.
In Terre Haute, genetic counseling students participate in cancer clinics at Union Hospital, and Tucker also gets prenatal referrals.
In one case, a patient wanted to know her risk for colon cancer because of the medical history on her dad’s side of the family. “When we sat down with the patient, we realized she had a risk from her mom’s history, too, that had never crossed her mind,” Tucker said. “There were genetic changes in her mom’s history that raised a red flag for breast cancer.”
It turned out the woman was more at risk for breast cancer. “We were able to outline a management plan for her that she could take back to her primary care doctor … based on her genetic markers, here is what she needed to do to reduce her risk of cancer as much as possible.”
The patient was advised to have not only a mammogram each year, but also an MRI and to rotate them so she was having testing every six months; the patient has other options as well.
The genetic counseling clinic also hopes to do more with mental health issues. While there is no genetic testing, counselors “can help families understand the implications of things that run in families,” Tucker said. Another goal is to add cardiology and pediatrics.
One of the second-year students is Miranda Ruben, 24, who is currently doing prenatal and pediatric clinicals at Gundersen Health System in LaCrosse, Wisconsin.
Prenatal clinics involve women who are pregnant and might include screening for Down Syndrome, trisomy 13 or trisomy 18. Trisomy 13 and trisomy 18 are genetic disorders that include a combination of birth defects, and most babies born with it won’t live beyond a few days or weeks, Ruben said.
Pediatric counseling might involve talking to parents of a child who has autism, learning difficulties or multiple birth defects to find out if it was genetic. “Sometimes parents want to know if other kids, or future kids, are at risk,” Ruben said.
Ruben, a Wisconsin native, was inspired to pursue genetic counseling through some personal experiences. As she grew up, she had a friend with muscular dystrophy; the friend’s sister decided to get tested to see if she was a carrier and learned there was the potential for her to have a baby with the disorder.
The friend’s sister, who worked with a genetic counselor, decided to have her eggs harvested, and she only implanted eggs [fertilized by her husband’s sperm] that would not develop muscular dystrophy. “She had two healthy children,” Ruben said.
While genetic counseling can involve difficult situations, it can also be rewarding with positive outcomes, such as being able to tell a couple their baby is not at risk for certain diseases or birth defects, Ruben said.
Back in Terre Haute, Brooke Sample is a first-year student in the program. “It’s a really cool intersection of being able to help people … and having a lot of science knowledge,” she said.
There are a lot of genetic misconceptions and “there’s a lack of knowledge among the public, and I could help bridge that gap and help people understand how genetics affects them and how it doesn’t,” Sample said.
