Online Tool Supports Family Screening for Inherited Cancer Risk

Many health systems lack structured processes to help patients alert family members, limiting cascade testing and timely prevention. With the volume of testing rising and dozens of cancer risk genes routinely assessed, scalable approaches to “cascade” outreach are needed. A new study shows a web-based platform can support patients in informing family members and facilitating downstream testing.

University of Michigan Health Rogel Cancer Center (Ann Arbor, MI, USA) investigators developed the Genetic Information and Family Testing (GIFT) web platform to extend communication beyond the index patient. GIFT provides structured education on inherited variants and decision support to help users explain results to relatives. The platform enables invitation of first- and second-degree relatives, who then receive information on genetic risk, tools to decide about testing, and access to testing services.

In a cluster randomized trial reported in the Journal of Clinical Oncology, the team enrolled 414 cancer survivors diagnosed in 2018–2019 who carried a pathogenic variant. The intervention tested two factors: online-only versus addition of a human navigator, and free testing versus a US$50 testing fee for relatives. About 20% of enrolled patients invited relatives; approximately one-third of invited relatives enrolled, and 90% of those who enrolled ordered genetic testing.

Adding a human navigator did not increase enrollment, indicating an online-only approach may be sufficient in this setting. Offering free testing doubled the likelihood that relatives completed testing, although absolute testing numbers remained low. Investigators reported that many patients and families were comfortable using a virtual tool to share and learn about genetic risk, and user feedback characterized the site as easy to navigate without assistance.

A related study published in JCO Oncology Practice examined 1,767 women with breast, ovarian, or uterine cancer. Eighty percent spoke with a genetic counselor; 71% said the counselor encouraged family discussion, while 57% reported receiving advice on how to do so and 38% said the counselor spoke directly to a relative. The GIFT team is developing a second iteration that integrates artificial intelligence (AI) to personalize risk information and improve patient–family communication.

“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. 

“Our online intervention is a promising blueprint to address this critical need for cascade genetic education and testing,” said Steven J. Katz, Professor of Internal Medicine and of Health Behavior and Policy at the University of Michigan.

Related Links
University of Michigan Health Rogel Cancer Center