"I am not a number!" Opinions and preferences of people with intellectual disability about genetic healthcare.

ABSTRACT: There is limited research exploring the knowledge and experiences of genetic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults with intellectual disability and eight support people were interviewed in this inclusive research study. The transcribed interviews were analysed using inductive content analysis. The findings were discussed in a focus group with ten adults with intellectual disability and in three multi-stakeholder advisory workshops, contributing to the validity and trustworthiness of the findings. Five main themes emerged: (i) access to genetic healthcare services is inequitable, with several barriers to the informed consent process; (ii) the experiences and opinions o

SUBMITTER: Strnadova I 

PROVIDER: S-EPMC10474088 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature