Data linkage: ethics, law and policy

The main objective of this proposal is to bring together international knowledge and expertise in an edited book on the ethics, law and policy of record linkage for health research. A Brocher Foundation residency will give the team the opportunity to leverage their individual expertise in the areas of ethics, law and policy into a comprehensive treatment of the use of data linkage for research. The book will assist stakeholders to realise the enormous benefits to health and health systems across the world offered by data linkage, while minimising the risks to individual privacy.

The second objective is to work with collaborators based in Europe to achieve an ongoing international discussion about these issues. This issue is currently under intense scrutiny in Europe because in 2014 the European Parliament voted in favour of amendments to the EU General Data Protection Regulation to further limit the circumstances in which datasets of personal information may be used for research. Many researchers believe that this is unwarranted and does not provide an appropriate public interest balance. The project will promote discussion of this issue with researchers and other experts whose work will be impacted directly by this change.