Adoptees' experiences of using direct-to-consumer genetic testing and determinants of this use: A mixed study in Quebec.

Abstract

Adoptees' use of direct-to-consumer genetic testing (DTC-GT) is known to raise both ethical and emotional issues, and it can also challenge their identity. The objective of the present study was to describe the experiences of DTC-GT use among adoptees living in Quebec and to better understand the benefits and disadvantages of use. We adopted a mixed method approach whereby a questionnaire comprising standardized scales was administered to 143 adoptees who had used genetic testing and 40 adoptees who had not. Semi-structured interviews were performed with five respondents from the DTC-GT use group. The quantitative and qualitative data were analyzed and integrated together using the Pillar Integration Process. The results highlighted familial reunion as the primary motivation for the use of DTC-GT among responding adoptees. Reported challenges included needing help with results interpretation, as well as the need for autonomy in the ownership of the results. Participants describe not being particularly concerned by potential ethical issues, describing the benefits of the tests as more important than possible disadvantages. Overall, participants had a good experience of using DTC-GT, and users were less anxious. Various factors associated with the use and experience of use were highlighted (age, psychological distress, community membership, etc.). The results from this study provide much-needed information about adoptees' needs regarding DTC-GT, highlight key risk factors, and introduces best practice recommendations so that adoptees are properly informed and supported when pursuing DTC-GT.