RT Journal Article
SR Electronic
T1 Participant experience of invasive research in adults with intellectual disability
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 594
OP 597
DO 10.1136/medethics-2012-101077
VO 39
IS 9
A1 Catherine Jane McAllister
A1 Claire Louise Kelly
A1 Katherine Elizabeth Manning
A1 Anthony John Holland
YR 2013
UL http://jme.bmj.com/content/39/9/594.abstract
AB Clinical research is a necessity if effective and safe treatments are to be developed. However, this may well include the need for research that is best described as ‘invasive’ in that it may be associated with some discomfort or inconvenience. Limitations in the undertaking of invasive research involving people with intellectual disabilities (ID) are perhaps related to anxieties within the academic community and among ethics committees; however, the consequence of this neglect is that innovative treatments specific to people with ID may not be developed. Such concerns are likely to continue while there is limited published knowledge regarding the actual experiences of people with ID who have participated in invasive clinical research. As part of a pilot study trialling the novel use of a surgically inserted device to curb overeating in people with Prader–Willi syndrome (PWS) we have investigated the experience of research through semistructured qualitative interviews involving three participants and their carers. Thematic analysis revealed that the adults with PWS and their family carers rated their participation positively, seeing it as a rewarding and enriching experience. This brief report discusses findings from our interview data in order to highlight strategies which may ensure that research is acceptable to participants, meets the necessary ethical standards and is able to achieve the aims set out by the researchers. To our knowledge, this is the first study to record experiences directly from people with PWS and their carers regarding their involvement in invasive clinical research.