Comments of National Center for Health Research on USPSTF Draft Research Plan for BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing

February 14, 2024

We appreciate the opportunity to share our views on the United States Preventive Services Task Force (USPSTF) draft research plan regarding “BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing.”

The National Center for Health Research (NCHR) is a nonprofit think tank that conducts, analyzes, and scrutinizes research on a range of health issues, with a particular focus on which prevention strategies and treatments are most effective for which patients and consumers. We do not accept funding from companies that make products that are the subject of our work, so we have no conflicts of interest.

The draft research plan is an excellent overview of the questions and issues that need to be addressed and we support those plans. However, we strongly urge the USPSTF’s research plan to also evaluate how to best communicate with patients who are considering testing or who are receiving their test results. In our interviews with patients, we have found that when information is given about the lifetime risks of breast and ovarian cancer for women with BRCA-1/BRCA-2 genetic mutations, most women become frightened.  However, they are relatively reassured when they are also given information about the risks of breast and ovarian cancer in the short-term, such as within next 5 to 10 years. Since the risk of developing breast and ovarian cancer is much lower in the short-term, women are less frightened and less likely to feel that they must urgently undergo surgery that will have major implications on their quality of life or life plans, such as the ability to bear children. All patients deserve information about the short-term, long-term, and lifetime risk of developing BRCA-associated cancers, but this is especially important for younger women.

In addition, communicating risks to patients should include statistics on absolute risks and risk reduction for different interventions compared to no interventions, as well as relative risks.  For example, if a patient with a BRCA mutation has a risk of developing breast cancer during the next X number of years that is twice as high as women without a BRCA mutation, many BRCA positive women will interpret that information differently than being told that their risk of developing breast cancer is 20% instead of a 10% risk for women without a BRCA mutation. Similarly, if the risk of ovarian cancer during the next Y number of years is reduced by 50%, that may be interpreted differently by a patient than being told that her risk of developing ovarian cancer within the next years would be 5% instead of 10%.

Therefore, as part of USPSFT’s research plan for BRCA-related cancers, we urge the USPSTF to evaluate the impact that different ways of communicating risk has on patients’ decisions, satisfaction with their decisions, and their quality of life.