Genomics, health records, database linkage and privacy

The author was commissioned by the Nuffield Council on Bioethics to write this paper in order to inform the Council’s discussions about possible future work on this topic. The paper is intended to provide an overview of key clinical, ethical, social, legal and policy issues, but is not intended to offer any conclusions or recommendations regarding future policy and practice. Any views expressed in the paper are the author’s own and not those of the Nuffield Council on Bioethics.

Authors

Ruud H.J. ter Meulen, Ainsley J. Newson, Mari-Rose Kennedy, Behnaz Schofield Centre for Ethics in Medicine, School of Social and Community Medicine University of Bristol

Summary

This paper outlines the current state of the art, future developments and main ethical issues that arise in the context of genomics, health records, database linkage and privacy. Current oversight and potential questions that might need to be addressed are highlighted.