The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review

Purpose Genetic testing is frequently conducted on people with intellectual disability. This systematic literature review sought to assess what research has been conducted with people with intellectual disability to investigate their opinions and experiences of genetic counselling and testing. Methods Search of five online databases (from year of database creation to 2021) yielded 1,162 articles. Seven articles met the inclusion criteria. We assessed the quality, accessibility and inclusivity of each study and extracted the data. Deductive content analysis was performed. Results Most study participants demonstrated both the desire and the capability to learn more about genetic conditions and genetic tests. Participants expressed a wide variety of opinions about genetic tests, similar to the range of opinions of the general population. All studies were small, from a limited number of countries, and analysis showed limited evidence of inclusivity or accessibility. Conclusions This review highlights major gaps in understanding of the opinions, experiences, and preferences of people with intellectual disability regarding genetic counselling and testing. There is urgent need for research to co-design a more inclusive genomic model of care to address this failure in healthcare accessibility and equity.