Assessing Minor Children’s Readiness to Receive Genetic Information

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More and more people are receiving genetic and genomic sequencing with the assumption that this will improve health outcomes and/or health behaviors (14). However, these tests are being utilized with an incomplete understanding of the implications of genetic risk information on individuals and their family members (50). Existing studies on this topic have largely focused on adults (4, 8-10). There is comparatively little information about the implications of parental genetic information on minor children (35, 39, 40). This gap matters because many parents now routinely receive genetic test results (22). Though parents may not want to burden their children with distressing information, data indicate that it is crucial for parents to adequately and/or accurately communicate about genetic risk information with their children, particularly adolescent children (1, 12). While data suggests this information should be communicated to minor children, very little data exists on when and how to communicate this to minor children, leaving parents and providers in the dark. In order to sufficiently examine questions of when and how to communicate parental genetic information to minor children, it is paramount to consider a child’s own unique developmental stage, cognitive capacity, and ability to cope with such information. To properly address this subject, the fields of pediatric bioethics, genetics, and child psychology must be applied. I am uniquely positioned to conduct this research, since I have expertise in pediatric bioethics and genetics. However, I need rigorous training in child psychology which I will obtain through: 2 years of course work at the Institute of Child Development at the University of Minnesota, advisory boards consisting of 12 members who are internationally renowned thought leaders in the field, directed readings, and national conferences. Using knowledge and research methods gained from two years of this training child psychology, I will conduct in-depth semi-structured interviews with parent-child pairs at risk for and affected by three different genetic conditions. These interviews will richly characterize both parent and child experiences with and perspectives on communicating parental genetic risk information and assess the perceived readiness of the minor child to receive parental genetic risk information from both the perspective of the parent and minor child. The proposed study will generate novel data on minor’s readiness to receive parental genetic risk information, how both parents and minor children think about the communication process, the values of each parents and minor children, and potential divergences between how parents and minor children think about the communication process. The proposed study will also generate elements of an intervention that may be used by parents and/or health professionals to assess minor children’s readiness to receive genetic risk information, based a child’s unique developmental stage and cognitive capacity. This intervention will be piloted and validated in my future work.