Abstract
Privacy is a well-established element of the governance and narrative of modern society. In research, it is a mainstay of good and best practice; major research initiatives all speak of safeguarding participants’ rights and ensuring ‘privacy protecting’ processing of personal data. However, while privacy protection is pervasive in modern society and is at the conceptual heart of human rights, it remains nebulous in character. For researchers who engage with people in their studies, the need to respect privacy is obvious, yet how to do so is less so. This chapter offers first an explanation of why privacy is a difficult concept to express, how the law approaches the concept, and how it might be explored as a broader normative concept that can be operationalised by researchers. In that broad scheme, I show how individuals respond to the same privacy situation in different ways – that we have a range of privacy sensitivities. I think about four privacy elements in the law: human rights, privacy in legal theory, personal data protection and consent. Finally, I consider how law participates in the broader normative understanding of property as the private life lived in society.
| Original language | English |
|---|---|
| Title of host publication | The Cambridge Handbook of Health Research Regulation |
| Editors | Graeme Laurie, Edward Dove, Agomoni Ganguli-Mitra, Catriona McMillan, Emily Postan, Nayha Sethi, Annie Sorbie |
| Publisher | Cambridge University Press |
| Chapter | 7 |
| Pages | 72-80 |
| Number of pages | 9 |
| ISBN (Electronic) | 9781108620024 |
| ISBN (Print) | 9781108475976 |
| DOIs | |
| Publication status | Published - 1 Jan 2021 |
Keywords
- confidentiality
- discourse
- privacy
- public interests
- public sensitivities
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