Literature DB >> 19305715

Data protection and the promotion of health research.

Valerie Steeves1.   

Abstract

This paper challenges the argument that data protection legislation may harm research by unduly restricting the flow of personal health information. I unpack the assumption that privacy is an individual right that must give way to research as a social good, and explore how data protection laws facilitate the flow of information for research purposes. I conclude that researchers should embrace data protection laws because they help construct trust in research practices, mitigate the commercial imperatives that flow from the fact that research is a public-private enterprise and protect the accuracy of data. Good research design should recognize that privacy is a social value and an essential element of psychological health and social relationships. And since research databases do not exist in isolation, researchers must respect the fact that the non-consensual flow of information poses risks of harm, including the secondary use of health research databases for social control, that must be managed.

Year:  2007        PMID: 19305715      PMCID: PMC2585459     

Source DB:  PubMed          Journal:  Healthc Policy        ISSN: 1715-6572


  8 in total

1.  Using patient-identifiable data for observational research and audit.

Authors:  R Al-Shahi; C Warlow
Journal:  BMJ       Date:  2000-10-28

2.  The privacy paradox: laying Orwell's ghost to rest.

Authors:  R E Upshur; B Morin; V Goel
Journal:  CMAJ       Date:  2001-08-07       Impact factor: 8.262

3.  Registry research and medical privacy.

Authors:  Julie R Ingelfinger; Jeffrey M Drazen
Journal:  N Engl J Med       Date:  2004-04-01       Impact factor: 91.245

4.  Consumer organisations criticise influence of drug companies.

Authors:  Zosia Kmietowicz
Journal:  BMJ       Date:  2004-10-23

Review 5.  Human rights and patients' privacy in UK hospitals.

Authors:  J Woogara
Journal:  Nurs Ethics       Date:  2001-05       Impact factor: 2.874

6.  Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students.

Authors:  T L Cheng; J A Savageau; A L Sattler; T G DeWitt
Journal:  JAMA       Date:  1993-03-17       Impact factor: 56.272

7.  Confidentiality in health records: evidence of current performance from a population survey in South Australia.

Authors:  E C Mulligan
Journal:  Med J Aust       Date:  2001-06-18       Impact factor: 7.738

8.  Impracticability of informed consent in the Registry of the Canadian Stroke Network.

Authors:  Jack V Tu; Donald J Willison; Frank L Silver; Jiming Fang; Janice A Richards; Andreas Laupacis; Moira K Kapral
Journal:  N Engl J Med       Date:  2004-04-01       Impact factor: 91.245

  8 in total
  1 in total

1.  Reducing barriers to accessing administrative data on SARS-CoV-2 vaccination for research.

Authors:  Andrew D McRae; Patrick Archambault; Patrick Fok; Hana Wiemer; Laurie J Morrison; Matthew Herder
Journal:  CMAJ       Date:  2022-07-18       Impact factor: 16.859

  1 in total

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