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Research ethics
An investigation of patients’ motivations for their participation in genetics-related research
  1. N Hallowell1,
  2. S Cooke1,
  3. G Crawford2,
  4. A Lucassen2,
  5. M Parker3,
  6. C Snowdon4
  1. 1
    Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  2. 2
    Wessex Clinical Genetics Service, University of Southampton, Southampton, UK
  3. 3
    The Ethox Centre, University of Oxford, Oxford, UK
  4. 4
    Medical Statistics Unit, London School of Hygiene and Tropical Medicine, London, UK
  1. Correspondence to Nina Hallowell, Centre for Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG; nina.hallowell{at}ed.ac.uk

Abstract

Design: Qualitative interview study.

Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences.

Findings: Interviewees gave a range of explanations for research participation. These were categorised as (a) social—research participation benefits the wider society by progressing science and improving treatment for everyone; (b) familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and (c) personal—research participation provides therapeutic or non-therapeutic benefits for oneself.

Conclusions: We discuss the distinction drawn between motives for research participation focused upon self (personal) and others (familial/social), and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.

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Footnotes

  • Funding This research was funded by a Cancer Research UK project grant, C8671/A5831, awarded to NH, MP and AL. The work of Dr Hallowell was supported in part by the Leverhulme Trust.

  • Aims To describe patients’ motives for participating in non-therapeutic and therapeutic research projects in the subspecialty of cancer genetics.

  • Competing interests None.

  • Provenance and Peer review Not commissioned; externally peer reviewed.

  • i The types of research that interviewees had participated in and the time elapsed since recruitment to different research projects are indicated after each quote.

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