Exploring parents' experiences with direct-to-consumer genetic testing for their adopted children

Direct-to-consumer genetic testing (DTC-GT) is rising in popularity and may be especially valuable to adoptees, who may be lacking family health history information. Because DTC-GT does not require a healthcare provider to be ordered, parents can conduct DTC-GT on their children, though professional organizations caution against it. The aims of this study were to understand parents' motivations to conduct DTC-GT on their adopted children, explore what they view as the pros and cons of testing, and learn how they use the information gained from testing. Parents who had conducted DTC-GT on their adopted minor child(ren) were eligible to participate. Semi-structured interviews were conducted, recorded, and transcribed. Inductive content analysis was completed using a codebook by three authors separately. A total of 11 interviews were conducted. Participants were motivated to conduct DTC-GT on their children to learn medical and ancestry information and/or to connect with biological relatives. Participants were also aware of the drawbacks of testing, namely privacy concerns. All participants shared the complete results with their children, except for two who withheld some medical information. The reaction to the results by participants and children was generally positive, with many parents recommending DTC-GT to other adoptive families. Most participants found the information gained from testing to be interesting but not useful and therefore made no changes to lifestyle or medical management. The participants in this study indicated that DTC-GT can be used to help adoptees navigate questions about sense of self and did not report DTC-GT directly leading to harm in most cases.