Family Attitudes towards Genetic Testing in Adults with ID V1
Research type
Research Study
Full title
Family attitudes towards genetic testing in adults with intellectual disability.
IRAS ID
282376
Contact name
Andrew Stanfield
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
0 years, 6 months, 1 days
Research summary
Recent advances in genetics have resulted in an increasing number of new genetic causes of intellectual disability(ID) being defined. Families of children with intellectual disabilities have repeatedly stressed the importance of obtaining a definitive diagnosis and research has also shown that there is a benefit to mothers in receiving a diagnosis for a child with intellectual disability. However, there is a lack of research on families' views on genetic testing for adults with intellectual disability.
There is a large cohort of adults, many with later onset psychiatric disorders, who have not had a diagnostic assessment utilising the latest genetic technologies.
Modern genetic testing could be helpful in patients with unexplained intellectual disability not only to identify the cause of ID and other associated conditions but could also improve the clinical understanding of wider health problems and prognosis, associated with these genetic conditions.
We propose to assess the attitudes of families towards genetic testing in adults with intellectual disability. This is a cross-sectional survey of families with adults with intellectual disability. An anonymous standardised questionnaire regarding knowledge and attitudes towards genetic testing will be given to the participant families of adults with ID. The families will be recruited by the learning disability service staff using the inclusion criteria. It is anticipated that questionnaire completion will take approximately 20 minutes. They will be provided with prepaid envelopes to return the completed questionnaire. Participants will only be involved in the study for as long as it takes for them to complete and return the questionnaire. They will be able to contact the research team through the professionals providing them with the questionnaire.REC name
East of England - Cambridge East Research Ethics Committee
REC reference
21/EE/0184
Date of REC Opinion
13 Aug 2021
REC opinion
Further Information Favourable Opinion