Dynamic consent is both an idea and a practice made possible through technological innovation. In practice, it is a personalised, communication portal to enable participants to become more engaged in the donation of their tissue samples and personal information for research purposes. The IT infrastructure is able to accommodate regulatory requirements around the content of participant consent as well as govern secondary research use. As such, the dynamic consent model functions as a form of ethics (or at least compliance) by design. Discussion will also consider how dynamic consent – and the IT that makes it possible – support participant autonomy and encourage public trust through enhanced researcher-participant relationships.
There are a limited number of places for this event, so please do register early to avoid disappointment. A light sandwich lunch will be provided to all registered attendees.
About the speakers
Karen Melham is a Senior Researcher in Ethics at the Centre for Health Law and Emerging Technologies (HeLEX) at the University of Oxford, and Ethicist for Oxford’s NIHR Biomedical Research Centre Bioresource Platform. She holds a PhD from Emory University, USA. Karen’s work focuses on good practice in medical research, with particular attention to aligning institutions and expertise to encourage both research capacity and public engagement in translational health research. She collaborates on a number of national and international projects related to biobanking, clinical research, genetics, and research integrity. Karen chairs NRES South Central Oxford A Research Ethics Committee. Further research interests include models of enactment for ethics and the formative moral pedagogy of governance procedures and mentoring.