Adult adoptees’ attitudes regarding the potential use of genetic information to fill the gap in their family health history

Abstract

Genetic testing can provide useful information related to a person’s health history. Adoptees who lack access to family health history due to inherent separation from their birth family are among those likely to benefit from this. Understanding their attitudes, including their hopes and concerns, will allow for better informed and more appropriate applications of genetic testing within this population and will help guide genetic counselling for adult adoptees. This qualitative study, involving four focus groups totalling 17 participants, examined adult adoptees’ attitudes that might influence decision-making around genetic testing. Using the NVivo 10 data analysis method, transcripts were content and thematically coded for: motivations for positive interest in genetic testing/genome sequencing; reasons for lack of interest or uncertainty about genetic testing/genome sequencing; and mixed feelings or overlapping positive and negative comments by the same individual in the same train of thought. Other studies have examined adoptive parents’ attitudes towards genetic testing, but this is the first to give voice to adoptees themselves. The results indicate that while adult adoptees’ attitudes about genetic testing appear to be similar to that of other laypeople, they reported unique concerns and perspectives regarding its potential use and their motivations and deterrents for pursuing it.