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Principles and Ethics of Collecting and Managing Health Data

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The Palgrave Handbook of Global Health Data Methods for Policy and Practice

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Abstract

Thomas and McNabb explore ethical issues associated with collecting and using data for public health. Distinguishing between ethics for medical research and for public health action, they identify unique challenges associated with maintaining health information systems. The authors emphasise the importance of ensuring data confidentiality, establishing principles for sharing data, determining availability and ownership of data, maintaining transparency, and using routine data to monitor health equity. They warn that, while data facilitate health action, speed of technological advances and escalation of data availability threaten society’s ability to maintain ethical principles, procedures, skills, and systems. Thomas and McNabb conclude that monitoring data ethics and training individuals to implement policies and procedures to guard them are urgent ethical imperatives.

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Author information

Authors and Affiliations

  1. Carolina Population Center and Department of Epidemiology, University of North Carolina, Chapel Hill, NC, USA

    James Thomas

  2. NewYork-Presbyterian Hospital, New York, NY, USA

    Sarah McNabb

Authors
  1. James Thomas
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  2. Sarah McNabb
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Correspondence to James Thomas .

Editor information

Editors and Affiliations

  1. Department of Epidemiology and Biostatistics School of Medicine, and Institute for Global Health Sciences, University of California San Francisco, San Francisco, CA, USA

    Sarah B. Macfarlane

  2. CAZ Consulting Sarl, Bloomberg Data for Health Initiative, Geneva, Switzerland

    Carla AbouZahr

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Thomas, J., McNabb, S. (2019). Principles and Ethics of Collecting and Managing Health Data. In: Macfarlane, S., AbouZahr, C. (eds) The Palgrave Handbook of Global Health Data Methods for Policy and Practice. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-137-54984-6_24

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  • DOI: https://doi.org/10.1057/978-1-137-54984-6_24

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