July 28, 2020

Your Counselor Will See You Now: How Genetic Counselors Are Leading the Way on Telehealth

By Melissa Laitner, PhD, MPH, Director of Science Policy

In 2020, SWHR is bringing attention to the need for advances in diagnostic and screening tests across a variety of diseases and conditions to improve the health of women. In today’s blog, we talk about the pros and cons of telehealth for genetic testing and counseling.

During the COVID-19 pandemic, more clinicians than ever are turning to telehealth. However, one group of providers has been seeing patients virtually for years: genetic counselors.

SWHR spoke to Shira Javanfard, MS, LCGC, a licensed genetic counselor with Kaiser Permanente, about genetic counseling’s early adoption of a telehealth model.

What Is Genetic Counseling?

Genetic counseling is a process to help patients understand and adapt to the medical and psychological implications of inherited conditions. “We help facilitate genetic screening and interpret the results of that screening,” Javanfard said.

During appointments, Javanfard’s initial priority is the reason behind the visit. “[W]e want to figure out the patient’s concern — what they hope to gain [from genetic screening],” she explained. She walks patients through a family medical history and discusses screening options.

“Should any tests come back positive for a gene mutation, we provide specific recommendations,” Javanfard said. These might include plans for preventative care or referrals to specialty clinics.

Why Women Seek Care

Genetic counseling is frequently associated with cancer. One often-cited example is screening for hereditary cancer syndromes, such as BRCA-related mutations, which may put patients at higher risk for certain cancers, including breast, ovarian, and prostate cancer.

Prenatal screening, which assesses the likelihood of a fetus having certain heritable disorders, and carrier screening, which assesses whether women and their partners carry genes that may place their future children at risk for certain disorders, are also common topics to discuss with a genetic counselor.

However, genetic counselors can address an assortment of inherited conditions and may work in any number of specialty clinics. “I work primarily with prenatal and cancer patients,” Javanfard said. “But we see a wide variety of patients, such as couples dealing with infertility or children with histories of developmental delays or birth defects.”

How Genetic Counselors Navigate Telehealth

The profession of genetic counseling is young compared to other medical specialties. Because of this, there are only a few thousand genetic counselors employed in the United States. That’s just one counselor for every 65,440 people.

With limited provider availability, counselors have turned to telehealth to increase access to care. Javanfard has been seeing many of her patients remotely for years.

“Pre-COVID, that meant going into the office to provide telephone and video appointments to patients [calling] either from a remote clinic or the privacy of their own home,” she said. Since the pandemic started, Javanfard has transitioned all of her work to telehealth and is no longer commuting into the office.

The Pros and Cons of Telehealth

Telehealth can provide a variety of benefits for patients and providers alike. “It increases access to services,” Javanfard said. “It also lowers costs for patients because they don’t have to take time off for work or cover the cost of transportation.”

Providers may find advantages in reduced no-show rates. “If a patient can’t make it to clinic, we can provide services via phone,” Javanfard said.

Telehealth can either speed the process up or slow it down depending on the patient’s situation. “We can get results faster to patients because we’re not waiting for them to come in,” she said. “Sometimes, this means faster treatment, too.”

On the other hand, Javanfard explained that in her experience with remote visits, “there’s a lower rate of testing uptake. When a patient is in the clinic with me, they can go right to the lab. If I have to mail them a testing kit at home, it could sit on their counter for weeks and they might forget to get it done.”

But telehealth allows Javanfard to reach a broader patient population than she might otherwise, including seriously ill patients who are too sick for an in-person appointment. For parents, taking telehealth appointments at home can reduce the need for child care.

What’s Next

The COVID-19 pandemic has made telehealth technology crucial. “The most important thing to realize is that telehealth works,” Javanfard said. “People are nervous [to try it], but we’ve found that patient satisfaction has increased. Allowing patients the flexibility of at-home appointments can help them feel more in control of their medical care.”

Javanfard believes it’s time to push to expand telehealth. “There is always a place for face-to-face interaction, but this is a viable alternative for patients who might otherwise not be able to access services,” she said. “Once you find the right system, you’ll realize this will probably be the standard mode of delivery within the next few years.”

Read about SWHR’s recommendations for expanded telehealth services here.

If you think you may benefit from seeing a genetic counselor, ask your primary care provider for a referral, or find a counselor through the National Society of Genetic Counselors’ online directory.

SWHR’s genetic screening and diagnostic testing blog series is supported by a grant from Myriad Women’s Health. SWHR maintains editorial control and independence over blog content.