In an era of consumer-driven genetic testing in the US, there is unprecedented opportunity for adults to learn about their future cancer risks and those of their relatives?including minor children. One way that this may occur is when parents submit minors? DNA samples, with or without their minors? permission, to companies like 23andMe. Clinical and policy guidelines from leading professional organizations discourage BRCA and other forms of predictive genetic testing in minors under most circumstances, and absolutely discourage testing without the involvement of a healthcare provider. However, most of these guidelines predate the burgeoning consumer genetic testing market and push for population genetic ancestry screening. At this moment in the US war on cancer, we must ask ourselves deep and penetrating questions about how far we, as a nation, are willing to go to reduce the incidence of and mortality from inherited cancer syndromes? We foresee a perfect storm?whereby the impetus for population screening for BRCA as a cancer control strategy intersects with consumer genetic testing, and produces powerful forces mobilizing parents? direct access into their children?s genomes in unprecedented ways that exceed fundamental limits of our knowledge about risks, benefits, and outcomes. From a federal science regulatory perspective, we must examine: what roles should research, healthcare, and policy assume here, both now and in the future, to encourage or discourage efforts that could ultimately be lifesaving? Under the parent award (R01CA246589), we are conducting a randomized controlled trial of a behavioral intervention to promote family communication about inherited cancer syndrome risks among BRCA+ mothers and their healthy adolescent and young adult children. This administrative supplement seeks to collect new and additional survey data from a new sample of BRCA+ mothers and fathers about the prevalence and pattern of testing minors for BRCA risk through consumer-driven genetic testing opportunities, and to learn parents? opinions about bioethical and policy hazards and opportunities presented by screening adolescents for BRCA mutations. Using a mixed-methods design, our 1-year project catalyzes new knowledge about frontier issues in precision cancer prevention. These data will inform future research and US clinical and policy updates to accommodate direct or indirect requests for pediatric genetic testing for adult-onset inherited cancer syndromes in a dynamic consumer genetics regulatory environment.
In light of recent calls for population genetic testing for hereditary cancer syndrome risks, changes in clinical guidelines, and a widening direct-to-consumer genetic testing marketplace, we will assess the opinions and behaviors of parents with alterations in BRCA genes about pediatric genetic testing. These results will inform the safe and ethical treatment of children in genetic research and ensure they benefit from genetic discovery.
