The Voice of EHDEN podcast is pleased to publish a new limited series on ethical, legal and social implications (ELSI) of working with health data for research. In this limited series into 2023, with expert colleagues, we will discuss the sociotechnical construct related to not only focusing on data, tools methods and skills of conducting at scale studies, but also protecting patients and citizens related to data generated on us and about us, and increasingly by us. Perceived risks, potential harms need also to be balanced with the challenge that everyday patients and citizens are harmed by the lack of evidence generation to respond to medical needs and improve outcomes. Within this ethical dilemma, we will converse in the podcast and explore the issues and possible solutions.
Voice of EHDEN - Ethics, Legal & Social Implications Episode #1: The Concentric Circles Framework and working with health data through federated data networks
The Voice of EHDEN podcast is pleased to publish a new limited series on ethical, legal and social implications (ELSI) of working with health data for research, and this first episode with Dr Richard Milne, social scientist, Wellcome Connecting Science and the Kavli Centre for Ethics, Science and the Public, and Dr Mark Sheehan, philosopher, Oxford Biomedical Research Centre Ethics Fellow, both in the UK.
In our discussion, both Richard and Mark outline the work of the EHDEN Ethics Advisory Board/ELSI Group, and in particular publication of the development of a conceptual framework to assist the research community in understanding how to balance protections with value of the data for research. In a person-centric model, the Concentric Circles View (CCV), provides a structure where the researcher's relative position to the patient or subject, in a concentric circle, illustrates the extent of duty of care required.
The closer a researcher is to the subject in the model, the greater granularity and need for protection of the subject (compliance with law, privacy and confidentiality), whereas the further out, the data is often less granular, with less protections. It may be in the future that metadata will contain such relevant information to aid a researcher in understanding both the constraints on the use of health data, and their responsibilities in using it.
The EHDEN EAB/ELSI Group are looking further to explore the application of the CCV, especially in federated data networks like EHDEN, which are designed to address some of the challenges outlined in the CCV. The publication, in Frontiers of Big Data, can be found here, to accompany listening to this episode. A lay, non-expert version will also be produced in due course.
The views expressed by the participants are personal and not necessarily reflective of their organisations.
Listen to the episode here or via your preferred podcast app.