Researchers have demonstrated that an online genetic education program may encourage patients with a family history of cancer to undertake genetic testing, according to a recent study published by Rodriguez et al in Gastroenterology.
Background
Although research has shown that an inherited susceptibility to some types of cancers may be more prevalent than previously thought, genetic testing among the family members of patients with cancer has yet to increase as anticipated.
“We know that 5% to 10% of all cancer [types] are linked to inherited genetic variations, [w]e know the specific variants linked to those cancers, and we know that cancer incidence and mortality can be reduced by identifying [patients] who carry those variants and intervening to lower their cancer risk or closely monitor them to detect cancer at its earliest stagesm when it is most treatable,” explained senior study author Sapna Syngal, MD, MPH, Co-Director of the Centers for Early Detection and Interception at Dana-Farber Cancer Institute and a faculty member at Brigham and Women’s Hospital. “[However], we also know that not enough [patients] who could benefit from genetic testing are being tested,” she stressed.
Study Methods and Results
In the recent GENERATE study, the researchers enrolled 601 patients (aged 18 years and older) who had first-degree relatives with pancreatic ductal adenocarcinoma or first- or second-degree relatives with pancreatic ductal adenocarcinoma and an inherited variation in any of the 13 genes linked to the disease. The participants represented 424 families across 45 states and were recruited through social media advertisements, pancreatic cancer advocacy organizations, and the six institutions collaborating on the GENERATE study.
The participants were then randomly assigned to receive one of two online genetic education programs: an interactive genetic education video session involving a 7-minute genetic education program narrated by a cancer physician or an online genetic education program offered through a commercial laboratory website. Both of the groups had access to all of the materials in the online genetic education program available through the commercial laboratory website.
The researchers found that following completion of the genetic education programs, 90% (n = 541) of the participants underwent testing for inherited variations in more than a dozen genes linked to pancreatic ductal adenocarcinoma. The patients who elected to undergo testing received a saliva-based genetic testing kit shipped to their homes, which would allow them to send a sample via mail to a testing center.
All of the participants completed surveys of their psychological well-being—including feelings of anxiety, depression, and cancer worry—when they enrolled in the study followed by questionnaires when they completed the program as well as 3 months later.
The researchers noted that the high response rate to the online genetic education programs was bolstered by the participants’ reactions to being tested. The 400 participants who completed the questionnaires regarding their experiences indicated the online genetic education programs and genetic testing did not spark anxiety, depression, or cancer worry after they received their genetic testing results.
Among the potential barriers to testing were a limited public understanding of inherited cancer risk, a lack of communication between a patient with cancer and family members who may be at risk, out-of-pocket costs, and a lack of nearby testing services and genetic counselors.
“We need new methods to make testing more available and increase awareness of its benefits,” Dr. Syngal emphasized. “The goal of this study was to assess how remote [online] genetic education programs that [patients] could access at home … might impact the decision to have genetic testing,” she added.
Conclusions
The researchers highlighted that one of the most encouraging aspects of the study was the geographic range of the participants. More than 50% of them were not family members of patients at the six study sites, suggesting they heard about the study through social media or advocacy organizations.
“This demonstrates that online education is a real option for [patients] who may not live near a genetic counseling center or testing facility,” underscored lead study author Nicolette Juliana Rodriguez, MD, MPH, of Dana-Farber Cancer Institute and Brigham and Women’s Hospital. “Our findings [showed] that remote health-care delivery methods have broad reach, are a successful and complementary option to traditional in-person models, and can increase the use of genetic testing. It’s critical that we continue to develop strategies of care delivery for historically marginalized racial and ethnic communities to ensure they have equal access to cancer genetics services,” she concluded.
Disclosure: The research in this study was supported by a Stand Up To Cancer–Lustgarten Foundation Pancreatic Cancer Interception Translational Cancer Research Grant; the Mayo Clinic SPORE in Pancreatic Cancer; the Khalifa Bin Zayed Foundation; the Bowen-Chapman Family Research Fund; the Pancreatic Cancer Action Network Catalyst Award; the National Institutes of Health; and an award through Harvard Catalyst | The Harvard Clinical and Translational Science Center. For full disclosures of the study authors, visit gastrojournal.org.
