Book contents
- Sharing Linked Data for Health Research
- Cambridge Bioethics and Law
- Sharing Linked Data for Health Research
- Copyright page
- Epigraph
- Contents
- Figures
- Tables
- Foreword
- Acknowledgements
- Abbreviations
- Introduction
- 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
- Part III Practice and Process of Decision Making
- Glossary
- Index
- Cambridge Bioethics and Law
2 - Individual, Collective, and Public Interests
from Part I - Context for Decision Making
Published online by Cambridge University Press: 02 June 2022
- Sharing Linked Data for Health Research
- Cambridge Bioethics and Law
- Sharing Linked Data for Health Research
- Copyright page
- Epigraph
- Contents
- Figures
- Tables
- Foreword
- Acknowledgements
- Abbreviations
- Introduction
- 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
- Part III Practice and Process of Decision Making
- Glossary
- Index
- Cambridge Bioethics and Law
Summary
Chapter two considers the interwoven interests of individual participants, collectives interests and the wider public interests in research using linked data. The chapter discusses the research participants interests including dignity, autonomy and privacy and the traditional approaches to protecting them — consent and anonymisation — and concludes that these do not operate to effectively to protect individual interests in this context. Research using linked data can also have impacts, both beneficial and harmful on others, including socio-demographic groups, disease groups and the wider community and these should be explicitly recognised and evaluated by decision makers. The current legal and ethical regulation of data linkage research are critiqued for being too individualistic and alternative approaches are discussed.
Keywords
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- Information
- Sharing Linked Data for Health ResearchToward Better Decision Making, pp. 28 - 56Publisher: Cambridge University PressPrint publication year: 2022