ANN ARBOR, Michigan — About 10% of cancers are linked to an inherited genetic variant, but as few as 1 in 15 cancer patients eligible for genetic testing complete it.
One barrier to testing: Lack of knowledge.
In a new study from researchers at the University of Michigan Rogel Cancer Center , an online resource and phone-based coaching both helped increase rates of genetic testing , suggesting that innovative ways to deliver information combined with motivational messaging could help move the needle.
"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 study engaged 793 adults from across Michigan who met clinical criteria for genetic evaluation based on their personal or family history of cancer. Participants were randomized to receive phone-based health coaching, a self-directed digital intervention or usual care. The two interventions included education about genetics and motivational interviewing concepts.
Overall, 5% of participants completed genetic testing after six months and 10% completed testing after a year. Those who received either intervention were more likely to complete testing or to report that they intended to seek testing, compared to those receiving usual care.
Results are published in JAMA Network Open.
"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," said lead study author Sarah Austin, MS, CGC, Clinical Assistant Professor of Genetic Medicine at Michigan Medicine.
The researchers followed up with participants at six months and a year, but Austin suspects that a longer time window may be needed to determine the real impact of the interventions, as people may require more time to make a decision about genetic testing and arrange clinical follow up.
The team also noted that future approaches must be tailored to individuals. While some people will respond to information delivered online or through videos, others may prefer a one-on-one phone call and coaching.
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.
The study, called the Michigan Genetic Hereditary Testing (MiGHT) 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. As results from the other projects are coming out, a theme is emerging: more work is needed to reach everyone eligible for cancer genetic testing. Investigators across projects are coming together to discuss research findings, pool their knowledge 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.
Additional authors: Emerson Delacroix, John D. Rice, Erika Keoppe, Elizabeth Rizzo, Erika N. Hanson, Liliana Arida-Moody, Shayna Weiner, Sarah T. Hawley, Wendy R. Uhlmann, J. Scott Roberts, Versha Pleasant, Katrina R. Ellis
Funding for this work is from National Cancer Institute grants U01CA232827-05 and P30CA046592
This work was supported by these Rogel Cancer Center Shared Resources : Cancer Health Communications
Disclosure: None relevant to this work
Paper cited: "Digital and Coaching Interventions for Uptake of Cancer Genetic Testing: The MiGHT Randomized Clinical Trial," JAMA Network Open. DOI: 10.1001/jamanetworkopen.2026.38274
Resources:
University of Michigan Rogel Cancer Center, www.rogelcancercenter.org
Michigan Medicine Cancer AnswerLine, 800-865-1125
