Online resources and coaching increased genetic testing uptake for cancer risk

About 10% of cancers are linked to an inherited genetic variant, yet as few as 1 in 15 cancer patients eligible for genetic testing actually complete it. A randomized clinical trial from researchers at the University of Michigan Rogel Cancer Center suggests that two scalable strategies — a self-directed online resource and phone-based health coaching — can help close that gap. In the Michigan Genetic Hereditary Testing (MiGHT) trial, published in JAMA Network Open, 793 adults from across Michigan who met clinical criteria for genetic evaluation based on their personal or family history of cancer were randomized to receive phone-based health coaching, a self-directed digital intervention, or usual care. Both interventions combined education about genetics with motivational interviewing concepts, and participants who received either one were more likely to move toward testing than those receiving usual care.

Overall, 5% of participants completed genetic testing within six months, rising to 10% after a year. Those who received either intervention were more likely to complete testing or to report that they intended to seek testing compared with participants receiving usual care. The trial was one of several program grants from the National Cancer Institute designed to improve identification and care of individuals with genetic susceptibility to cancer, funded through grants U01CA232827-05 and P30CA046592. “Many barriers exist to genetic testing, including access, cost, privacy concerns and fear. Scalable strategies are needed to overcome these barriers and better facilitate genetic testing,” said senior study author Elena Stoffel, MD, MPH, Clinical Professor of Internal Medicine/Gastroenterology at Michigan Medicine and Director of the Cancer Genetics Clinic at the Rogel Cancer Center. The grant was co-led by Jennifer J. Griggs, MD, MPH, and Ken Resnicow, PhD.

The rationale behind the interventions rests on a well-documented barrier: lack of knowledge. By pairing factual education about genetics and hereditary cancer risk with motivational interviewing concepts, the researchers aimed to address not only what eligible individuals knew about testing but also their readiness to act on that knowledge. The digital arm allowed participants to work through information at their own pace, while the coaching arm provided one-on-one phone calls. That both formats moved participants toward testing suggests that innovative ways to deliver information combined with motivational messaging can shift behavior, even if the absolute gains in completed testing were modest.

Lead study author Sarah Austin, MS, CGC, Clinical Assistant Professor of Genetic Medicine at Michigan Medicine, emphasized both the progress and the limitations. “We were able to move the needle, enabling some people in this study to complete genetic testing. We had hoped uptake of testing would be higher, but this highlights that there are a lot of barriers to accessing genetics and cancer prevention services. Even if people have the knowledge to decide this is something they want to do, there’s still a gap in getting them to make an appointment or talk to their doctor,” Austin said. The researchers followed up with participants at six months and at one year, but Austin suspects that a longer time window may be needed to capture the real impact of the interventions, since people may require more time to make a decision about genetic testing and to arrange clinical follow-up.

The team also noted that future approaches must be tailored to individuals. While some people respond to information delivered online or through videos, others may prefer a one-on-one phone call and coaching — a distinction that any scalable program will need to accommodate. The stakes of closing the testing gap are concrete: people who test positive for a genetic variant associated with increased cancer risk may be able to receive specialized cancer screening or surveillance to detect cancer sooner, or treatments to prevent cancer. For people already diagnosed with cancer, genetic testing could guide treatment choices. As results from the other NCI-funded projects emerge, a theme is becoming clear: more work is needed to reach everyone eligible for cancer genetic testing, and investigators across the projects are coming together to pool their findings and shape future plans. “It’s not just about bridging the knowledge gap, but also addressing access, referral pathways and other barriers to help people get tested more easily,” Austin said.

Subject of Research: People

Article Title: Online resources and coaching helped people seek genetic testing for cancer

Article References: Online resources and coaching helped people seek genetic testing for cancer. Original publication (Bibliographic details unavailable.)

Image Credits: AI Generated

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Keywords: cancer genetic testing, hereditary cancer, randomized clinical trial, MiGHT trial, health coaching, digital intervention, motivational interviewing, JAMA Network Open, University of Michigan Rogel Cancer Center, genetic counseling, Online, resources