New Trial Attempts to Make Genetic Counseling and Testing More Accessible

Most people who should undergo genetic testing according to the US Preventive Services Task Force guidelines have not been tested or counseled. More than 1.2 million women with a history of breast or ovarian cancer have not had genetic testing even though they have met the criteria for such testing. To expand access, researchers have explored a number of new service delivery models, including phone counseling, which has been shown to be as effective as in-person counseling.³ As part of these efforts, researchers are now trying to incorporate online components into genetic service delivery models.

Nadine Rayes, MS, a genetic counselor at the University of Texas MD Anderson Cancer Center in Houston, and her colleagues have designed a trial that will compare the effectiveness of delivering online genetic education — a brief pretest educational video and an online results report — along with both pretesting and posttesting phone genetic counseling to 3 alternative approaches that may make the process more accessible.⁴ The first of these 3 approaches involves online genetic education with optional phone counseling, the second one involves online genetic education with required pretest phone genetic counseling, and the third one involves online genetic education with required posttest phone genetic counseling. 

The authors are hypothesizing that the outcomes for individuals who will receive 1 of the 3 alternatives will not be inferior to the outcomes of those who will receive the standard option of telephone genetic counseling both before and after testing. The trial, called MAGENTA for “MAking GENetic Testing Accessible,” will involve 3000 women who may be at increased risk of developing ovarian cancer due to personal or family history of cancer. The women will undergo testing for 19 hereditary cancer genes.

“In-person genetic counseling is likely to remain standard practice in large cancer centers and academic institutions,” the authors wrote in the paper. “However, alternative service delivery models for genetic counseling must be further explored to find an optimal balance of clinical quality with increased access and financial sustainability.”

Erica Ramos, MS, LCGC, director of clinical and product development at Geisinger National Precision Health, Washington, D.C., who was not involved in the study, said she liked the approach presented in the new paper. “I think it is a great idea,” she said. Ramos thinks that some of the proposed tools — such as the online education components — may help to spread awareness of genetic counseling and testing. But she also added, “Studies like this will tell us whether or not [such tools] can be valuable to patients in the absence of a genetic counselor.” In addition, Ramos stressed the importance of maintaining quality of services while trying to facilitate access.

The new study “recognizes that as physicians who deal with cancer, we are underutilizing the very important tool of genetic counseling and testing,” said Alice Police, MD, Westchester regional director of breast surgery at Northwell Health Cancer Institute in Sleepy Hollow, New York, who was not involved in the new research. “This is the first study that I have seen that is looking in a practical way at increasing the number of people tested by making genetic counselling easy and accessible online or over the phone instead of in person with a burdensome amount of paperwork,” she said.

References

1. Levy DE, Garber JE, Shields AE. Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization. J Gen Intern Med. 2009;24(7):822–828.
2. Childers CP, Childers KK, Maggard-Gibbons M, Macinko J. National Estimates of genetic testing in women with a history of breast or ovarian Cancer. J Clin Oncol. 2017;35(34):3800–3806.
3. Schwartz MD, Valdimarsdottir HB, Peshkin BN, et al. Randomized noninferiority trial of telephone versus in-person genetic counseling for hereditary breast and ovarian cancer. J Clin Oncol. 2014;32(7):618–626.
4. Rayes N, Bowen DJ, Coffin T, et al. MAGENTA (Making Genetic testing accessible): a prospective randomized controlled trial comparing online genetic education and telephone genetic counseling for hereditary cancer genetic testing. BMC Cancer. 2019 Jul 2;19(1):648.

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