Sharing Linked Data for Health Research: Toward Better Decision Making

ISBN-13: 9781108426640 / Angielski / Twarda / 2022 / 300 str.

Perth) Flack Felicity (University of Western Australia

Opis

A practical guide to reform of the regulatory environment for access to government held data for research.

Recenzje

'This excellent monograph explains how linked personal data can be safely used to answer important health questions. Future decisions about data sharing, requiring legal authorisation as well as independent ethical review, should be timely, transparent and based on clear and consistent criteria.' John D. Mathews, Professorial Fellow, University of Melbourne

Spis treści

Part I. Context for decision making; 1. Research using linked data; 2. Individual, collective, and public interests; 3. Social licence; Part II. Frameworks for decision making; 4. Human rights; 5. Research ethics; 6. Law; Part III. Practice and process of decision making; 7. Existing practice and processes; 8. Better practice and processes.