Addressing Genomic Disparities in Cancer Survivors

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Genetic testing (GT) for hereditary cancer and related health services do not reach all segments of the population equitably. Racial disparities in genomic care are profound, persistent, and growing. Less than 30% of high-risk cancer patients are referred for germline GT, with appreciably lower referral and testing rates among racial minorities, especially among Blacks. GT of cancer survivors can directly inform treatment following progression or treatment resistance and can facilitate primary and secondary prevention of cancers in their unaffected relatives. Demand for GC (genetic counseling) and GT continues to increase with expanding GT indications and decreasing sequencing costs yet supply of genetic counselors remains limited. The conventional approach of referral to pretest genetic counseling is a common barrier to receiving GT. Further, evidence suggests that traditional comprehensive, pre-test GC does not meet the needs of many survivors, especially underserved minorities. Thus, new models of genome-based care are needed that are responsive to community needs, improve access, do not overburden scarce genetic counseling resources, and do not widen existing disparities. Some health care systems and commercial GT laboratories use digital interventions, including videos and relational agents (RAs), instead of traditional pre-test GC sessions, without providing specifics about community engagement development, acceptability, or efficacy in oncology settings through a rigorous methodologic strategy as we propose. Given the life-saving benefits of GT, understanding how to effectively educate, empower and test high-risk patients in a culturally acceptable way can move the field forward and reduce persistent racial disparities. This study will address this translational gap. In response to community identified needs and enthusiastic support from cancer patients, relatives and community advocates while also building on our pilot work, we will enroll 428 Black cancer patients meeting national guidelines for GT into a 2-arm randomized controlled trial. This approach may be of particular benefit to hundreds of thousands Black patients and their relatives because they are often unaware of their risks, less likely to have a provider discuss their risk and refer them for GT at the time of diagnosis and are not equably garnering the potentially lifesaving benefits of personalized prevention, screening, and treatment. The specific aims are to: 1) Compare the efficacy of a culturally tailored RA vs. Enhanced Usual Care (EUC) on engagement in genetic education and GT uptake; 2) Evaluate the impact of the RA vs. EUC on informed decision-making and psychosocial outcomes; and 3) Explore potential mechanisms by assessing mediators and moderations of effectiveness. Data from this trial can be used to guide clinical practice and policy decisions for advancing cancer health equity and improving access to genetic education and GT. If successful, this approach could be applied to other cancers and chronic conditions.