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Portrait of Titti Mattsson. Photo.

Titti Mattsson

Professor

Portrait of Titti Mattsson. Photo.

Collecting data for quality improvement and research in Swedish healthcare, and the individual patient's right and ability to protect their privacy

Author

  • Titti Mattsson

Summary, in English

During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and systematic improvement studies? This paper discusses the tension between the need that also people with limited or no decision-making capacity participate in research and clinical evaluations, and the difficulty in ensuring the privacy of the incapacitated to the same degree that others enjoy. I will argue that Sweden has chosen to put the common good above the individual’s privacy, and therefore have accepted a certain weakening of the incapacitated persons’ privacy protection.

Department/s

  • Norma Research Programme
  • Health Law
  • Department of Law

Publishing year

2016

Language

English

Pages

160-168

Publication/Series

International journal of technology policy and law

Volume

2

Issue

2/3/4

Document type

Journal article

Publisher

Inderscience Publishers

Topic

  • Law

Keywords

  • socialrätt
  • demens
  • patientdata
  • beslutskapacitet
  • åldrande
  • medicinska journaler
  • forskning
  • skydd för privatlivet
  • kliniska utvärderingar
  • konfidentialitet
  • social welfare law
  • incapacited persons
  • quality registries
  • dementia
  • patient data
  • decision-making capacity
  • elderly
  • aging population
  • medical records
  • research
  • privacy protection
  • clinical evaluations
  • confidentiality

Status

Published

Project

  • Elder Law within the Norma Research Programme
  • Research on decisionally incapacitated individuals. A legal study of the Act concerning the Ethical Review of Research Involving Humans, and its application
  • Elder Law within the Norma Research Programme

Research group

  • Norma Research Programme
  • Health Law

ISBN/ISSN/Other

  • ISSN: 1742-4240