“The truth should not be hidden”: Experiences and Recommendations of Individuals Making NPE Discoveries Through Genetic Genealogy Databases

Abstract

PurposeFueled by direct-to-consumer (DTC) genetic testing and genetic-relative finder (GRF) services, some participants in genetic genealogy databases are making “not parent expected” (NPE) discoveries. To better understand experiences of this phenomenon, we surveyed a large cohort of users of GRF services concerning their experiences following an NPE discovery. MethodsUsing thematic analysis, we analyzed responses from a cohort of GRF users (n=646) to open-ended survey items to understand these experiences and their recommendations for DTC genetic testing companies and other GRF users. ResultsWe found that individuals had both positive and negative emotional experiences related to the NPE discovery. Positive aspects included deeper self-understanding, connecting with new family members, and uncovering answers to questions. Negative aspects included rejection by new genetic relatives, inability to seek answers from relatives who had already died, and impairment of family relationships, especially with mothers. For many participants, the challenges following the discovery nevertheless felt worthwhile because the truth was uncovered. Perhaps notably, some participants suggested enhanced warnings pre-discovery and improved support post-discovery from companies who provide DTC genetic testing services. ConclusionGRF services are powerful tools for family research and genealogy. Despite some possible positive and worthwhile experiences arising from making an NPE discovery, GRF users risk dealing with this potentially life-altering experience without adequate support. Participants in this study recommended an increase in resources from DTC genetic testing companies that could help users anticipate and navigate an NPE discovery.