About 10 percent of pancreatic cancer patients carry an inherited genetic mutation that can increase the risk of certain cancers, including not only pancreatic cancer, but also breast, ovarian, and prostate cancers.
When a pancreatic cancer patient is found to have this type of genetic mutation, they are urged to tell their relatives to get tested for the same mutation. However, these relatives often don’t know that this mutation can be passed down through the family. For this reason, having information about genetic risk is important for family members. If a family member is found to have an inherited risk, there may be options for early detection and/or more frequent pancreatic cancer screening.
The goal of the GENERATE Study is to learn if giving people genetic information in different ways affects their decisions about whether to have genetic testing themselves. Participants must have a first-degree relative with pancreatic cancer, with an inherited mutation. The study is ongoing but has met recruitment goals. For more information read the following articles:
- Improving cascade genetic testing for families with inherited pancreatic cancer (PDAC) risk: The GENetic Education, Risk Assessment and TEsting (GENERATE) study.
- Novel Models of Genetic Education and Testing for Pancreatic Cancer Interception: Preliminary Results from the GENERATE Study
The collaborators involved in the GENERATE Study are Dana-Farber Cancer Institute, Johns Hopkins University, Mayo Clinic, MD Anderson Cancer Center, and University of California, San Diego. Dr. Barbara Kenner of the Kenner Family Research Fund is one of the study’s advocates.
Funding for this study is provided by the Lustgarten Foundation and the Stand Up To Cancer-Lustgarten Foundation collaboration the Pancreatic Cancer Collective.