Towards developing best practice guidance for ethical participant-led health research. (360G-Wellcome-103685_Z_14_Z)

The workshop's general goal is to advance the debate about the appropriate ethical oversight of participant-led research (PLR). With the exception of the papers by O'Connor (2013) and Vayena/Tasioulas (2013), the question of oversight has hitherto received little sustained attention, despite its being generally recognized as an important issue by journal editors, PLR participants and others. It is clear that the straightforward application of the institutional review board system of oversight, w hich applies to standard research, would be too onerous as a general prescription. The most effective way to make a contribution in this area is to foster dialogue among the various stakeholders about the promise of PLR, and the challenges it faces, and in light of this to formulate guidelines for ethical oversight that adequately protect participants while enabling PLR to deliver on the distinctive benefits it promises. More specifically the workshops aims are twofold: 1. At a theoretical leve l, to provide a forum for dialogue, where principles of research governance as they relate to PLR will be debated. 2. At a practical level, to develop consensus on a set of best practice guidelines, which can serve as the foundations for articulating specific oversight schemes.