An online intervention can help cancer patients share genetic testing results with family
Platform addresses opportunity to identify family members at increased cancer risk who may benefit from genetic testing
ANN ARBOR, Michigan — When a person with cancer finds out they carry an inherited genetic variant that puts them at higher risk of cancer, the results can help inform their treatment or steps to prevent additional cancer.
But what about their family members who may also have inherited that genetic variant? While oncologists focus on the patient in front of them, no one follows up with family members who may be at increased risk of cancer.
“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,” said Steven J. Katz, M.D., M.P.H., a researcher at the University of Michigan Health Rogel Cancer Center.
Katz and colleagues developed a web-based intervention to educate people with cancer about the impact genetic variants can have on their family. The tool is called Genetic Information and Family Testing, or GIFT. It includes education and decision support to help patients feel comfortable communicating genetic testing information to their relatives. The platform also allows patients to invite first- and second-degree relatives to the site. Relatives get information about genetic risk, tools to help them decide if they want to receive genetic testing and access to testing.
The trial enrolled 414 cancer survivors diagnosed in 2018-2019 who carried a pathogenic variant. The intervention randomized two factors: online only vs. human navigator and free or $50 testing.
About one in five patients enrolled in the trial invited relatives and about one in three invited relatives enrolled. Nine of 10 enrolled relatives ordered genetic testing.
The human navigator did not increase enrollment, suggesting an online-only tool could be sufficient. Those offered free testing were twice as likely to be tested but the overall numbers were low.
“Our online intervention is a promising blueprint to address this critical need for cascade genetic education and testing,” said senior study author Katz, professor of internal medicine and of health behavior and policy at the University of Michigan.
The study was published in the Journal of Clinical Oncology.
This year, more than 250,000 cancer patients will undergo genetic testing, which can identify more than 40 cancer genes with variants that impact cancer risk. These numbers will both continue to increase: more genetic variants, more patients receiving testing.
Cascading genetic testing results to relatives can help family members understand their own risk, make decisions about getting genetic testing, and possibly alter their cancer screening or prevention strategies based on their risk. But making these family connections remains challenging.
In a related study, published in JCO Oncology Practice, Katz and colleagues found that patients understand the importance of sharing their genetic testing results with their family members. This study, which looked 1,767 women with breast, ovarian or uterine cancer, found that 80% talked to a genetic counselor and 71% said the genetic counselor encouraged them to talk to family members. But 57% said the counselor provided advice about how to do so and 38% said the counselor talked directly to a relative.
“This is a big unmet need,” said senior author Allison Kurian, M.D., M.Sc., professor of medicine and of epidemiology and population health at Stanford University School of Medicine. “While patients are supported through their genetic testing, they get little clinical guidance on how to talk about it with their family. 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.”
The team is working on a second iteration that weaves in an AI assistant to personalize the genetic risk information and improve communication between patients and family members.
“This study showed that many cancer patients and their families are comfortable using a virtual tool to share and learn information about genetic risk. Study participants told us our site was easy to use and that they were able to go through the program and access services without the help of a navigator,” said study co-author Lawrence C. An, M.D., associate professor of internal medicine at Michigan Medicine and co-director of Rogel’s Center for Health Communications Research. “It’s an example of how evolving communication technology can personalize engagement and fill the gap in cascade genetic testing.”
Additional authors: Timothy P. Hofer, M.D.; Paul Abrahamse, M.A.; Rebecca R. Courser, M.P.H.; Rachel Hodan, M.S.; Rachel S. Tocco, M.A.; Sonia Rios-Ventura; Kevin C. Ward, Ph.D.; Ann S. Hamilton, Ph.D.; Melissa K. Frey, M.D., M.S.; Allison Furgal, Ph.D.; Lawrence C. An, M.D.; Allison W. Kurian, M.D., M.Sc.
Funding for this work is from National Cancer Institute grants U01CA254822, P30CA046592 and R01CA283207; American Cancer Society grant RSG-20-025-01
This work was supported by these Rogel Cancer Center Shared Resources: Cancer Health Communications and Cancer Data Science
Disclosure: None
Papers cited:
“Results From the Genetic Information and Family Testing (GIFT) Study: A Cluster Randomized Trial,” Journal of Clinical Oncology. DOI: 10.1200/JCO-25-02196
“Patient Engagement with Clinicians and Family Members About Genetic Test Results Across Risk Groups in Women with Hereditary Cancer Susceptibility,” JCO Oncology Practice. DOI: 10.1200/OP-25-00776
Resources:
University of Michigan Rogel Cancer Center, www.rogelcancercenter.org
Michigan Medicine Cancer AnswerLine, 800-865-1125
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But what about their family members who may also have inherited that genetic variant? While oncologists focus on the patient in front of them, no one follows up with family members who may be at increased risk of cancer.
“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,” said Steven J. Katz, M.D., M.P.H., a researcher at the University of Michigan Health Rogel Cancer Center.
Katz and colleagues developed a web-based intervention to educate people with cancer about the impact genetic variants can have on their family. The tool is called Genetic Information and Family Testing, or GIFT. It includes education and decision support to help patients feel comfortable communicating genetic testing information to their relatives. The platform also allows patients to invite first- and second-degree relatives to the site. Relatives get information about genetic risk, tools to help them decide if they want to receive genetic testing and access to testing.
The trial enrolled 414 cancer survivors diagnosed in 2018-2019 who carried a pathogenic variant. The intervention randomized two factors: online only vs. human navigator and free or $50 testing.
About one in five patients enrolled in the trial invited relatives and about one in three invited relatives enrolled. Nine of 10 enrolled relatives ordered genetic testing.
The human navigator did not increase enrollment, suggesting an online-only tool could be sufficient. Those offered free testing were twice as likely to be tested but the overall numbers were low.
“Our online intervention is a promising blueprint to address this critical need for cascade genetic education and testing,” said senior study author Katz, professor of internal medicine and of health behavior and policy at the University of Michigan.
The study was published in the Journal of Clinical Oncology.
This year, more than 250,000 cancer patients will undergo genetic testing, which can identify more than 40 cancer genes with variants that impact cancer risk. These numbers will both continue to increase: more genetic variants, more patients receiving testing.
Cascading genetic testing results to relatives can help family members understand their own risk, make decisions about getting genetic testing, and possibly alter their cancer screening or prevention strategies based on their risk. But making these family connections remains challenging.
In a related study, published in JCO Oncology Practice, Katz and colleagues found that patients understand the importance of sharing their genetic testing results with their family members. This study, which looked 1,767 women with breast, ovarian or uterine cancer, found that 80% talked to a genetic counselor and 71% said the genetic counselor encouraged them to talk to family members. But 57% said the counselor provided advice about how to do so and 38% said the counselor talked directly to a relative.
“This is a big unmet need,” said senior author Allison Kurian, M.D., M.Sc., professor of medicine and of epidemiology and population health at Stanford University School of Medicine. “While patients are supported through their genetic testing, they get little clinical guidance on how to talk about it with their family. 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.”
The team is working on a second iteration that weaves in an AI assistant to personalize the genetic risk information and improve communication between patients and family members.
“This study showed that many cancer patients and their families are comfortable using a virtual tool to share and learn information about genetic risk. Study participants told us our site was easy to use and that they were able to go through the program and access services without the help of a navigator,” said study co-author Lawrence C. An, M.D., associate professor of internal medicine at Michigan Medicine and co-director of Rogel’s Center for Health Communications Research. “It’s an example of how evolving communication technology can personalize engagement and fill the gap in cascade genetic testing.”
Additional authors: Timothy P. Hofer, M.D.; Paul Abrahamse, M.A.; Rebecca R. Courser, M.P.H.; Rachel Hodan, M.S.; Rachel S. Tocco, M.A.; Sonia Rios-Ventura; Kevin C. Ward, Ph.D.; Ann S. Hamilton, Ph.D.; Melissa K. Frey, M.D., M.S.; Allison Furgal, Ph.D.; Lawrence C. An, M.D.; Allison W. Kurian, M.D., M.Sc.
Funding for this work is from National Cancer Institute grants U01CA254822, P30CA046592 and R01CA283207; American Cancer Society grant RSG-20-025-01
This work was supported by these Rogel Cancer Center Shared Resources: Cancer Health Communications and Cancer Data Science
Disclosure: None
Papers cited:
“Results From the Genetic Information and Family Testing (GIFT) Study: A Cluster Randomized Trial,” Journal of Clinical Oncology. DOI: 10.1200/JCO-25-02196
“Patient Engagement with Clinicians and Family Members About Genetic Test Results Across Risk Groups in Women with Hereditary Cancer Susceptibility,” JCO Oncology Practice. DOI: 10.1200/OP-25-00776
Resources:
University of Michigan Rogel Cancer Center, www.rogelcancercenter.org
Michigan Medicine Cancer AnswerLine, 800-865-1125
# # #
END