Identifying Unmet Needs to Support Individuals Impacted by Misattributed Parentage Events (The SupportSeq Study) - PROJECT SUMMARY It has been said that, in the age of consumer genetics, there are no more family secrets. This conclusion is a consequence of the rapid growth of direct-to-consumer genetic databases, many of which offer customers the opportunity to identify genetic relatives among other consenting customers via genetic genealogy services. The outcomes of these services are often portrayed as potentially interesting and generally harmless, but for a growing number of Americans, they include the potentially life-changing discovery that someone who was believed to be a biological parent is not genetically related to them (called a misattributed parentage event, or MPE). In our prior survey research with over 23,000 genetic genealogy customers, 2.8% of the sample had made an MPE discovery. Extrapolating to the U.S. general population, almost 10 million living Americans have made or eventually could make an MPE discovery. However, the true impact of these discoveries is far larger, as there are consequences not just for the person with misattributed parentage, but also for their many previously known and newly discovered family members. Studies have consistently found that MPE discoveries can have profound and long-lasting impacts on health and well-being resulting from fractured self and family identities, disrupted relationships, and powerful and persistent feelings of shock, denial, anger, betrayal, loss, grief, and shame. However, it is not yet known what resources are needed by this vulnerable population to help manage these impacts. Moreover, although patients are sharing their MPE discoveries with physicians, counselors, and therapists, it is not yet known how clinicians are managing these encounters or what tools or information are needed by them to appropriately care for MPE patients. There is an urgent need to understand the unmet support needs of those impacted by MPE discoveries and the resource needs of their clinicians. The objective of this proposal is to identify a set of needed MPE resources and interventions for future development, implementation, and evaluation. Throughout the project, we will engage individuals impacted by MPEs, as well as clinicians who may care for them, to identify unmet support needs and resource gaps. In Aim 1, we will characterize the unmet support needs of individuals impacted by MPEs from in-depth interviews with individuals who discovered misattributed parentage as well as previously known and newly discovered family members. In Aim 2, we will characterize clinical resource needs from in-depth interviews with family medicine physicians, genetic counselors, and mental health professionals. This research is significant because it will yield rich information to support the millions of Americans impacted by MPE discoveries. This project is innovative because it will triangulate personal and professional perspectives to advance bioethics and clinical research horizons. It will have a positive impact by collecting data that will guide a multidisciplinary effort to design and disseminate effective tools to support those impacted by MPE discoveries.
