COREON session : Friday June 14, 11.00 – 12.30
Towards a Code of Conduct for data driven health research
Chair: Marie José Bonthuis, Lifelines
Speakers: Lotte Ramerman (NIVEL), Remy van den Boom (TNO), Evert-Ben van Veen (MLCF), Eric Vermeulen (VSOP).
COREON has a long tradition in organising self-regulation for data and tissue driven research. Such Codes of Conduct give practical guidance to researchers how to perform compliant and responsible research with data and tissue. Additionally they harmonise the criteria for review of such research. With the advent of the General Data Protection Regulation (GDPR) the Code of Conduct for health research with data must be completely revised. This session will start with a discussion of the results of qualitative interviews with stakeholders about their expectations for the new code. Topics covered are the scope, content, mode of presentation, and usability of the new Code of Conduct. A Code of Conduct should give a clear and comprehensive guide to research with data and tissue. On certain issues there is consensus already. COREON issued Statements about those, such as about 'further use' of patient data. We will discuss those statements. The session will proceed with how the new Code of Conduct will be drafted. Recent experiences with similar attempts will be presented as well some of the main vexing topics for a Code of Conduct for health research such as about broad consent and the exceptions to the informed consent principle. The connection with European developments will be exemplified. Aligning with patient organisations is paramount in modern epidemiological research. They will present their view on a new Code of Conduct. We will discuss how epidemiologists can contribute to the new Code of Conduct together with other stakeholders.