What’s Stopping Women from Getting Genetic Testing?
Guidelines state that all women diagnosed with ovarian cancer should receive genetic counseling and the option for genetic testing. However, according to the National Cancer Institute, only about one-third of ovarian cancer patients undergo genetic testing.
Laura Barton, certified genetic counselor
“Genetic testing for these patients is important for a few reasons. One is for treatment purposes; sometimes there are various therapies that might be recommended based on if there’s a genetic cause for ovarian cancer,” said Laura Barton, a certified genetic counselor at Moffitt Cancer Center. “The other is for family members. If we can find that mutation then we can test your family members to see if they carry it or not.”
Using funds raised by Miles for Moffitt in 2017, the cancer center launched a study to identify factors that impact genetic testing among ovarian cancer patients.
Moffitt used funds raised by Miles for Moffitt in 2017 to study why the majority of ovarian cancer patients aren't receiving genetic testing.
“We wanted to look into why patients aren’t being referred as much as they should be and what we can do to educate patients and providers to increase those referrals,” said Barton. “The goal was to get to the root of why we are missing these patients and what we can do better to address that.”
The study found there were multiple factors that kept ovarian cancer patients from receiving genetic testing, including a patient’s knowledge or beliefs about genetic counseling and testing. Both patients and providers also cited insurance coverage and out-of-pocket costs as major concerns, and in many cases, there was a lack of communication when it came to providers emphasizing the importance of genetic testing.
“For me, what I think is one of the biggest barriers is that people aren’t aware that genetic counseling exists,” said Tammy Li, a volunteer and board member of FORCE, or Facing Our Risk of Cancer Empowered, a national nonprofit organization for adults facing heredity cancers. “So, I think much of it is educating primary care doctors and gynecologists about the role of genetic counseling and that it’s not just testing, but also helping make that informed decision.”
Tammy Li (right) poses with her sister. Li underwent genetic testing and found out she has both BRCA 1 and 2 mutations, which increase her risk for cancer.
Li understands firsthand the importance of that informed decision. After multiple family members were diagnosed at an early age with ovarian and breast cancers, she underwent genetic testing and tested positive for the BRCA1 and BRCA2 mutations. She has had two bouts of melanoma—one prior to genetic testing and one after—and has had a preventative mastectomy and her ovaries removed. She is now followed closely by her doctors at Moffitt.
Moffitt has the advantage of having genetic counselors embedded within the institution, making referrals easier than in the community. The Gynecological Oncology Program has also established a Genetics Tumor Board, a meeting among providers and genetic counselors to discuss innovative ways to treat patients. Since its creation, more than 70% of patients included in the tumor board have received genetic testing.
While the Genetics Tumor Board has helped increase the number of ovarian cancer patients who are receiving genetic testing, Barton says there is still a long way to go.
“I think the biggest step moving forward is educating providers in order to enable them to give the most appropriate information,” said Barton. “When I actually get to see a patient and talk them through why we’re doing this, I have very few patients not want to do testing.”
By clearing up genetic testing myths and providing patients with the best information, Barton says she is confident one day 100% of ovarian cancer patients will be referred for genetic counseling.
