RD-PEC Terms of Reference

  • The RD-PEC is a high-level advisory group offering advice and guidance on ethical, social and participatory issues arising within Neuromics, EURenOmics and RD Connect.
  • Although it will be the responsibility of individual ethics and patient boards/councils within each project to keep well informed about the ethical regulations relevant to their own area of expertise. The RD-PEC will be responsive to specific requests for advice, clarification and information from project partners and those with an interest in the work of the projects.
  • Where appropriate the RD-PEC, in conjunction with project partners, and any relevant external agencies will contribute to maintaining researchers’ awareness of ethical issues.
  • The RD-PEC will contribute towards a project ethics and governance policy and advise on, and where appropriate contribute to, the ethics training of project partners.
  • Communication will be maintained between RD-PEC members by a members’ only distribution list. Communication with the wider rare disease community will be via common e-mail distribution list and via the project web-sites.
  •  Training for RD-PEC members will be initiated from expertise within the RD-PEC membership.
  • Reporting responsibilities are to the Executive Management Committees of each project, in the form of minutes of each RD-PEC meeting and the minimum of one annual report to the EC.
  • Privacy and confidentiality – it is agreed that in the interests of openness the business of the RD-PEC may be openly discussed outside of the RD-PEC group unless explicit agreement has been reached that an item or issue is confidential. Minutes of the meetings will be copied to the Executive Management Committee(s) and may be available for wider disclosure on request.
  • Public statements, oral and written presentations on behalf of the RD-PEC: it should be presumed that public statements regarding RD-PEC activities are made in the spirit of corporate representation and such statements must be clearly distinguished from any statements made in a personal capacity.