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J Med Ethics 2009;35:113-119 doi:10.1136/jme.2008.024224
  • Research ethics

Healthcare professionals’ and researchers’ understanding of cancer genetics activities: a qualitative interview study

  1. N Hallowell1,
  2. S Cooke1,
  3. G Crawford2,
  4. M Parker3,
  5. A Lucassen2
  1. 1
    Public Health Sciences, University of Edinburgh, UK
  2. 2
    University of Southampton and the Wessex Cancer Genetics Clinic, Princess Anne Hospital, Southampton, UK
  3. 3
    The Ethox Centre, University of Oxford, Oxford, UK
  1. Nina Hallowell, Public Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, UK; nina.hallowell{at}ed.ac.uk
  • Received 8 January 2008
  • Revised 2 May 2008
  • Accepted 8 May 2008

Abstract

Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained.

Design: Qualitative interview study.

Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK.

Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is described as vague or blurred, and this ambiguity is regarded as being sustained by a range of methodological, ethical and economic factors. The implications of these findings for the “therapeutic misconception” are explored. It is argued that while research participation is seen as having therapeutic benefit for individual patients, the interviewees are not labouring under any misconceptions about the relationship between research and clinical care. It is suggested that concepts such as the “therapeutic misconception” may have less relevance in highly technological specialities that are characterised by a developing evidence base.

Footnotes

  • Funding: Cancer Research UK Grant (C8671/A5831) awarded to N Hallowell, M Parker and A Lucassen.

  • Competing interests: None.

  • Ethics approval: Ethical approval for this study was received from the Scotland A Multi–Centre Research Ethics Committee on 16 December 2005, Ref 05/MRE00/112.

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