Testing Rates for Inherited Cancer Risk are Increased via Remote Genetic Education in 2023

Genetic testing of cancer patients’ relatives hasn’t expanded as much as doctors had hoped, despite the fact that it has become evident that an inherited vulnerability to various malignancies is more widespread than previously believed.  A remote online genetic education program can be a very effective way to encourage people who have a family history of cancer to get tested for the disease.

A total of 601 individuals from 45 states participated in the GENerate trial, which focused on educating, risk-assessing, and testing those who had a close family with the most prevalent kind of pancreatic cancer. Participants might choose from two distant online programs to learn about genetics. Ninety percent of the participants finished testing for inherited changes in over a dozen genes associated to pancreatic cancer after taking part in one of the two genetic education programs.

The participants’ reactions to testing added credence to the excellent response to the remote genetic education programs. The 400 individuals who answered a questionnaire about their experience reported that after learning the results of their genetic tests, they did not experience any anxiety, depression, or concerns about cancer.

A few possible obstacles to testing include the general public’s incomplete knowledge of hereditary cancer risk, the lack of communication between a cancer patient and family members who might also be at risk, the expense of testing, and the dearth of genetic counselors and testing facilities in the area.

To expand testing accessibility and raise knowledge of its advantages, new approaches are needed. The purpose of this study was to evaluate the potential influence of online, remote genetic education programs on the choice to undergo genetic testing.

Participants in the study required to be at least eighteen years old, have a first-degree relative with PDAC, or have a first- or second-degree relative with PDAC and a genetic variant in any of the 13 genes associated with the disease.

One of two groups—made up of 424 families—was chosen at random for the 601 participants. One group saw a seven-minute genetic education presentation narrated by a cancer doctor and engaged in an interactive genetic education video session. The only genetic education resource available to the other group was an online course via a website run by a for-profit laboratory. Every resource in the online genetic education program that was accessible via the website of the commercial laboratory was available to both groups.

90% of the study group, or 541 participants, decided to have their PDAC-linked genes tested for inherited variations after the program was over. They chose to have a saliva-based genetic testing kit shipped to their homes, which they would then use to mail a sample to a testing facility.

The study’s participants’ diverse geographic backgrounds are among its most encouraging features, according to the researchers. More over half of the participants in the trial did not have family members who were patients at any of the six study locations; it is possible that they learned about the study from advocacy groups or social media.

This proves that for those who might not reside close to a genetic counseling or testing facility, online instruction is a viable choice.

When they enrolled in the study, all participants filled out assessments about their psychological well-being, which included questions about anxiety, despair, and worry about cancer. They also answered questionnaires at the end of the program and three months later. The 400 participants who filled out the surveys reported no change in anxiety, despair, or worry about cancer as a result of the remote genetic teaching and testing programs.

Results show that methods of delivering healthcare remotely have a wide audience, work well as a supplement to in-person models, and can lead to a rise in the use of genetic testing. In order to guarantee that historically excluded racial and ethnic communities have equitable access to cancer genetics services, it is imperative that we keep developing ways of care delivery for them.