Procedures

The demographics screening survey presented interested people with a study information sheet that explained the study goals and procedures. Individuals could only progress to the demographic questions if they indicated that they met all inclusion criteria and consented to the survey. Respondents were only eligible for an interview if they submitted a completed REDCap survey and had answered all required questions.

All interviews were conducted by a single researcher (AR), a genetic counseling graduate student, in January and February 2021. Interviews were recorded using Microsoft Teams™ video conferencing software. Over a period of 6 weeks, individuals who completed the survey were invited for the interview. Participant invitations were sent in an order which prioritized a diverse representation of ages, races and ethnicities, genders, and levels of education. Invitations were sent on a weekly basis, and if a previous invitation went without response, additional prospects would be emailed. The first 18 individuals to respond to the email invitations were interviewed. No additional interviews were conducted as decline in new themes was observed and patterns of redundancy were identified as recordings were reviewed. This indicated that data saturation was being reached (Saunders et al. 2018). Upon completing the interview, participants were awarded a $20 electronic gift card as compensation. The de-identified interview audio recordings were transcribed verbatim by AR or third-party transcription service Temi (2021) and manually reviewed by AR for accuracy.