A new web-based intervention aims to help cancer patients share inherited genetic risk information with their family members, according to a March 24 announcement by researchers at the University of Michigan Health Rogel Cancer Center.
The development is significant because while genetic testing can guide treatment and prevention for cancer patients, it also has important implications for relatives who may share the same inherited risks. Researchers say that few medical tests affect people beyond the patient, but germline genetic testing can be highly relevant to family health.
Steven J. Katz, M.D., M.P.H., a researcher at the center, said: "Few medical tests have implications for others beyond the patient. But with germline genetic testing, the results can be very significant to the health of others around you." The tool developed by Katz and colleagues is called Genetic Information and Family Testing (GIFT). It provides education and decision support for patients and allows them to invite first- and second-degree relatives to access information about genetic risk and consider getting tested themselves.
In a trial involving 414 cancer survivors diagnosed in 2018-2019 who carried pathogenic variants, about one in five invited relatives through GIFT enrolled in the program. Nine out of ten enrolled relatives ordered genetic testing. The study found that using an online-only tool was as effective as having a human navigator assist users. Offering free testing increased participation rates but overall numbers remained low.
Katz said: "Our online intervention is a promising blueprint to address this critical need for cascade genetic education and testing." The findings were published in the Journal of Clinical Oncology.
Additional research highlighted challenges in connecting patients' test results with their families. In another study led by Allison Kurian, M.D., M.Sc., professor at Stanford University School of Medicine, most women discussed results with counselors but fewer received advice on how to talk with family or had counselors speak directly with relatives. Kurian said: "This is a big unmet need... Our goal is to offer a family referral service to all clinicians so patients can make this connection back to their families. The results of our pilot study suggest patients want this and families want it as well."
Looking ahead, researchers are working on an updated version of GIFT that will include an AI assistant designed to personalize information and improve communication between patients and their families.
Study co-author Lawrence C. An, M.D., said: "This study showed that many cancer patients and their families are comfortable using a virtual tool to share and learn information about genetic risk... It's an example of how evolving communication technology can personalize engagement and fill the gap in cascade genetic testing."
