From Preparedness to Social Support: How Individuals Navigate Misattributed Parentage Experiences

Abstract

Advances in genetic testing have made it easier than ever for individuals to learn about their ancestry, health risks, and biological relatives, but results are not always as expected. Both direct-to-consumer (DTC) genetic testing and clinical genomic sequencing can reveal misattributed parentage experiences (MPEs), in which a presumed parent is discovered not to be a biological parent. MPEs can profoundly disrupt one’s identity, cause psychological distress, and erode trust in one's parents. Despite the growing number of people who have a MPE, little research has examined how individuals are prepared for the possibility of having a MPE prior to testing or how they are supported afterward. This dissertation addresses these gaps across three studies. First, a content analysis of 43 consent forms from DTC genetic testing companies and academic/commercial laboratories offering whole-exome, whole-genome sequencing or genotyping was conducted. Findings revealed substantial variability in whether and how MPEs were mentioned, and disclosure practices lacked clarity. Reading level required of most consent forms exceeded recommended standards. These results suggest that many individuals undergo DTC genetic testing or clinical genomic sequencing without adequate preparation for a MPE. Next, social support exchanged in an online setting was examined through a content analysis of the 100 most commented posts and their 3,797 associated comments identified from the public Reddit community, r/donorconceived. Informational support, particularly situation appraisal and sharing one’s own experiences, predominated, though emotional, esteem, and network support were also present. Informational support frequently functioned as emotional support when perceived as personally relevant, blurring traditional distinctions between support categories. Lastly, the experiences of individuals who learned of their MPE from DTC genetic testing were explored through in-depth qualitative interviews, comparing those who joined MPE-specific online communities with those who did not. Findings revealed that people with MPEs are a heterogeneous community with diverse emotional responses and support needs. While online communities provided valuable social support, others found them to be overwhelming, and some desired in-person support in addition to online social support. Together, these studies demonstrate that current informed consent practices inadequately prepare individuals for the possibility of a MPE, and that online communities, while valuable, may not meet all support needs.