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Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk)
  1. Siobhan Sharkey1,
  2. Ray Jones2,
  3. Janet Smithson3,
  4. Elaine Hewis4,
  5. Tobit Emmens5,
  6. Tamsin Ford6,
  7. Christabel Owens7
  1. 1Peninsula Medical School, University of Exeter, Exeter, UK
  2. 2Health Informatics, University of Plymouth, Plymouth, UK
  3. 3College of Life and Environmental Sciences, University of Exeter, Exeter, UK
  4. 4Self-employed Trainer and Lecturer in Mental Health, UK
  5. 5Research Management and Innovation, Devon Partnership NHS Trust, Exeter, UK
  6. 6Peninsula Medical School, University of Exeter, Exeter, UK
  7. 7Devon Partnership NHS Trust & Peninsula Medical School, University of Exeter, Exeter, UK
  1. Correspondence to Dr Siobhan Sharkey, Research Fellow, Qualitative Methods, PenCLAHRC Research Group, Peninsula College of Medicine and Dentistry, Veysey Building, Salmon Pool Lane, Exeter EX2 4SG, UK; siobhan.sharkey{at}pms.ac.uk

Abstract

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a ‘report’ button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.

  • internet-research
  • ethics
  • discussion groups
  • self-harm
  • vulnerable
  • ethics committees/consultation
  • information technology
  • research ethics
  • suicide/assisted suicide
  • technology/risk assessment

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Footnotes

  • Funding This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Innovation, Speculation and Creativity (RISC) Programme (grant reference number RC-RG-0407-10098). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. SS and CO were partly supported during the writing of this paper by the NIHR CLAHRC for the Southwest Peninsula.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Southampton NHS REC with, This study was conducted with NHS REC approval.

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

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