Ethical, Legal & Social Implications #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.

You can listen to Ethical, Legal & Social Implications #1: The Concentric Circles Framework and working with health data through federated data networks online on Radio and Podcast. Open the player on this page to stream the available audio.

Ethical, Legal & Social Implications #1: The Concentric Circles Framework and working with health data through federated data networks is an episode from Voice of EHDEN by EHDEN_Account.

This episode is 00:41:03 long.

This episode was published on Nov 14, 2022.

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