Rare Disease Patient and Ethics Council (RD-PEC)

<p>The Rare Disease Patient and Ethics Council (RD‐PEC) examines ethical and social questions linked to research taking place in the context of RD‐Connect, Neuromics and EURenOmics. Anyone working on these projects, or with an interest in their work, can ask the PEC to consider an issue that they require expert guidance on.</p> <p>The development of new technologies and approaches for rare disease research infrastructure raises specific ethical issues that are not fully covered by commonly used ethical guidelines. An appropriate ethical clarification of these issues needs an institutional capacity to identify and evaluate them in their concrete contexts. This requires not only intellectual analysis from bioethicists but the empirical experience of patients, families, clinicians and scientists. The RD‐PEC is therefore organised to embrace multidisciplinary and experiential knowledge through the inclusion of diverse professions and patient representatives as well as strong links with the RD‐Connect Patient Advisory Council.</p> <p>The RD‐PEC is a voluntary group which works in a collegiate, collaborative and inclusive manner to provide ethical, social and participatory guidance and balanced opinion that will help to progress the work of RD Connect/Neuromics/EURenOmics.</p> <p>Based on best practice from similar large RD networking projects such as TREAT‐NMD, the RD‐PEC aims to be a reactive and responsive resource which can examine contemporary, pragmatic, sometimes urgent issues around the ethics of research and focus on useful, problem solving for researchers and clinicians. It makes use of a bottom‐up approach, generating knowledge triggered by empirical questions, with relevant results publicly available through the RD Connect website.</p> <p>Rather than being a source of formal or technical guidance on points of law, regulation and governance, the RD‐PEC is a forum for discussion and debate concerning emerging ethical issues and “reflective wisdom” for those posing particular questions. This poster will describe the rationale for forming the RD‐PEC, its structure and how to make use of its expertise.