Genetic Information: Exploring Value to Adult Adoptees

Human Genome Research

Investigators

Abstract

Many individuals who are adopted do not have access to personal or familial health information because of laws and practices that inhibit disclosure. The primary goal of this study was to explore adult adoptees' perceptions regarding the value of personal and familial health information. Data were collected from 46 adopted individuals, ages 21 to 67 years, through semi-structured qualitative telephone interviews. Interviews were tape recorded and transcribed, and transcripts were imported into NUDIST6 to facilitate coding and analysis. Preliminary results suggest several major themes related to: adoptees' motivations for seeking information (including health-related information) about their biological families; thoughts on the perceived role and importance of familial health information; and their experiences not having such information. The desire for health information - a common trigger and motivation leading adoptees' to search for their biological families - appears related to an adoptee's age and current health status. Familial health information was seen as useful for a number of reasons including to assist in diagnosis, to help predict future health, to understand current symptoms, and as a basis for considering preventative measures. Adoptees described strong feelings of frustration when they did not have familial health information. Further, participants thought that doctors often avoided the topic of adoption in medical interactions and offered suggestions for how adoptees could be better managed medically. Adoptees' attitudes and experiences have important clinical implications, both in terms of healthcare providers facilitating the acquisition of familial health information and caring for adoptees in the absence of it. This study will be submitted as a thesis toward qualification for a ScM degree from the Dept of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University. Results will be submitted as a publication in a professional journal during the next year.