Lookup NU author(s): Dr Pauline McCormack,
Dr Simon Woods
We will describe the work of the TREAT-NMD Project Ethics Council (PEC). The ethics council was instituted to examine and advise on ethical issues which arise out of translational research in neuromuscular disorders and particularly, the work of TREAT-NMD. The PEC is a voluntary multidisciplinary group comprised of patients and representatives of parent organisations, clinicians, scientists, parents, ethicists and legal academics. The PEC works in a collegiate, collaborative and inclusive manner to provide ethical guidance and balanced opinion in order to enhance the excellence TREAT-NMD aspires to. 6 of the 17 members are patients or their advocates.The Council works in three different ways. Firstly, it provides a publicly available question and answers forum where anyone with an ethical query concerning neuromuscular disorders can submit their question. Questions are debated by the Council who compile a summary answer and make this publicly available on the Council’s website. Secondly, the Council works on broad issues of interest which arise through the development of care and therapies for neuromuscular disorders and brings these issues to the attention of groups concerned, be that researchers, patient groups or regulators. Thirdly, the Council or a small group of members will work in private with any TREAT-NMD partner who has a sensitive or confidential ethical issue. The poster will describe how the PEC manages these processes. The Council has dealt with a wide range of issues and has proved to be a workable and effective model which could provide a framework for other organisations to replicate.
Author(s): McCormack P, Woods S
Publication type: Conference Proceedings (inc. Abstract)
Publication status: Published
Conference Name: TREAT-NMD International
Year of Conference: 2011