A family perspective of the value of a diagnosis for intellectual disability: experiences from a genetic research study

Many professionals working with individuals with intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The data reported here derive from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. A qualitative design was used, interviewing 120 members of 37 kinships and using framework analysis to explore the data. These family members were positive about participating in the genetic research. They wanted an explanation for what was going on in their family and to enable other family members to have choices about reproduction although the genetic research was unlikely to benefit individuals with intellectual disability.