Understanding How Genetic Information Impacts Lives

By Deborah Jeanne Sergeant

Many people think of genetic counselors as only pertaining to couples having a baby. However, their work spans the lifetime and can take place in many different settings.

“Genetic counselors are healthcare professionals who work with individuals, families, and other healthcare professionals to help them understand how genetic information impacts their lives or the lives of their patients,” said Kim Provenzano, nurse practitioner with Rochester Regional Health specializes in genetics.

In this role, they help families understand their health history for managing their own conditions and understanding how it can affect their family. They may work in a clinic, lab or research facility.

The most hands-on setting is in a medical clinic, which can include prenatal genetics, pediatric genetics or adult genetics. The least hands-on setting is in a lab, which is where the testing takes place. Genetic counselors perform the tests and advise medical personnel on how to interpret them. In education, genetic counselors research genetics and teach others who desire to enter the field.

The required degree to be a genetic counselor is a Master of Science in genetic counseling.

Mysti Geiger

“The specific prerequisite courses differ for each school, but typically include some courses in genetics, organic chemistry, biochemistry, biology, statistics, and/or psychology,” said Mystimarie Geiger, genetic counselor with Wilmot Cancer Institute’s hereditary cancer screening and risk reduction program.

A knack for science is helpful. After earning the master’s degree, the candidate must pass the American Board of Genetic Counseling national certification exam.

Geiger added that a background in counseling, patient care or other hands-on role can help prepare a candidate.

“Genetic counselors are one of the few medical providers who have the time in their schedule to really sit down and speak with a patient,” she said. “Most genetic counseling sessions take about an hour and the genetic counselor will spend a good portion of that time educating their patient and providing them with psychosocial support.”

Patients seek genetic testing for very serious reasons. What interventions may my baby need? Do I carry a gene mutation indicating a predisposition to a disease? How will my genetics affect my cancer treatment?

“You have to have empathy and be able to put yourself in patients’ shoes,” said Jessica Salamone, a certified genetic counselor and director of genetic counseling and cancer risk assessment at Elizabeth Wende Breast Care in Rochester. “You have to have difficult conversations with patients, once-in-a-lifetime conversations. Ten to 12 times a day, you’re doing this.”

Kim Provenzano

Most patients know little about genetics, so genetic counselors must know how to help make complex facts simple. Adapting to meet various patients’ communication styles represents a continual challenge for genetic counselors.

They must also act as detectives at times. Salamone said that many people do not know much about their grandparents’ or even their parents’ health. Many will not bring up information that they think is irrelevant but is actually important.

“You have to pull out information,” Salamone said.

Genetic counselors communicate with patients, their primary care providers, lab personnel and insurance representatives.

The field is also challenging because the science on genetics changes quickly. As with most medical fields, continuing education credits and periodic exams are required to maintain board certification. Genetic counselors can promote to managerial roles.

“It’s incredibly fulfilling,” Salamone said. “I don’t go home wondering what I did for the world. You change people’s lives and that’s an every day, every moment feeling. It doesn’t mean it’s all rainbows and sunshine, but you know you’re impacting people positively. People are thankful that you’re meeting them in the middle of a crisis. You see some of the weight come off as they know what is going on and they will have a plan.

“I’m very proud of the work I do as difficult as it is. It’s a privilege to sit in that sacred place where patients trust you.”

Ziprecruiter.com estimates the annual wage in Rochester as $79,341.