This study expands our knowledge of consent in linking survey and administrative data by studying respondents' behaviour when consenting to link their own records and when consenting to link those of their children. It develops and tests a number of hypothesised mechanisms of consent, some of which were not explored in the past. The hypotheses…

Background: Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of…