To share or not to share, that is the question for researchers who are privy to study participants’ incidental or secondary genetic information.
Effectively answering this question is the mission of Scott Roberts, PhD, Clinical Psychologist and Associate Professor at the University of Michigan, School of Public Health.
Through a series of studies under the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) program, led by Dr. Robert C. Green at Harvard Medical School, Dr. Roberts’s research has explored the process and impact of communicating genetic information gleaned during testing. Previous REVEAL studies have found that sharing and communicating the results of APOE genetic testing is generally safe and well-tolerated when done by a genetic counselor.
“Our research focused on how people understand and respond to genetic risk information,” he said. “We also investigated how people integrate that information into their broader health behaviors.”
REVEAL III included cognitively healthy adults in four U.S. cities. Three-quarters of study participants had one first-degree relative – a parent or sibling – with Alzheimer’s disease. Of the 257 study participants, approximately one-third (32 percent), carried the APOE4 gene. REVEAL III researchers informed all study participants of their individual risk for developing Alzheimer’s disease by the time they reach age 85.
“In one arm of the study, participants only received information about Alzheimer’s disease – a disease for which there are no great treatment options,” said Dr. Roberts. “Participants in the other study arm learned they were at risk for both Alzheimer’s disease and heart disease since the APOE4 gene is linked to both diseases.”
The REVEAL team scripted how this news was communicated to both groups of participants. This helped ensure that participants from both study arms received identical information about their genetic risk for Alzheimer’s. Information about both Alzheimer’s and heart disease was only shared with the second group.
Next, both groups were followed for up to one year after learning their test results to see if the information had any effect on their levels of anxiety and depression, or health behaviors that might help reduce disease risk (e.g., increased physical activity, healthy diet).
Dr. Roberts reported that people in both groups generally adjusted well to the news that they were at high risk for Alzheimer’s disease or high risk for both Alzheimer’s disease and heart disease. That is, very few had significant levels of depression or anxiety in response to their genetic test results. On the other hand, people who learned their risk for Alzheimer’s and heart disease were especially likely to report a positive change in their health behaviors.
“In general, people in Group 2 found that learning about their risk for heart disease was empowering rather than distressing,” Dr. Roberts said.
Dr. Roberts also noted that the study’s results should increase confidence among researchers pondering the psychological effects of sharing genomic results with study participants. “The results of this study support the idea that genetic risk information can be communicated in a safe and tolerable manner,” he said. Programs like the Alzheimer’s Prevention Initiative Generation Study will benefit from these findings as its researchers begin to disclose APOE test results to individuals who are considering participating in the clinical trial.