The Politics of Privacy, Confidentiality, and Ethics : Opening Research Methods
The Politics of Privacy, Confidentiality, and Ethics : Opening Research Methods
This chapter explores the politics of privacy, confidentiality, and ethics relating to e-Research, including the main directions in which existing research practices are challenged. It begins with a discussion of traditional research ethics and its related legal and administrative framework before turning to how technical change has forced researchers and policymakers to reconsider research ethics and practices. The chapter then examines the implications of ethical and moral dimensions for data sharing in genomics research, as well as the technical and institutional issues involved in protecting personal data. Finally, it considers the promise of e-Research and proposes novel methods to enhance the administration of research ethics.
Keywords: politics of privacy, confidentiality, ethics, e-Research, genomics, personal data, data sharing
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