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H09 Ask the experts! – using patient involvement in overcoming ethical dilemmmas in ethnographic research with hd families
  1. Alexandra Fisher1,2,
  2. Anna Lavis1,
  3. Sheila Greenfield1,
  4. Hugh Rickards1,2
  1. 1Institute of Applied Health Research, University of Birmingham, Murray Building, Edgbaston Campus, Birmingham. UK
  2. 2Neuropsychiatry Department, Birmingham and Solihull Mental Health Foundation Trust, The Barberry, Edgbaston, Birmingham, UK


Background A project to study social cognition (Fisher, Lavis et al., 2018) in the messiness (Gabb, 2010) of real life is proposed; but doing this without stifling the natural activity and social functioning which is vital to the observations and demonstrating that the research will do no harm is a difficult balance to ascertain. Critics of international ethical review processes suggest that doing so is restrictive to many forms of qualitative methods (Allbutt, 2010).

Aims To find methods which are true to the ethnographic methodology of the project but satisfy the principles of the World Medical Association Helsinki Treaty (World Medical Association, 2013) and American Anthropological Association (American Anthropological Association, 1998) ethical frameworks.

Methods After a literature review of many of the ethical dilemmas posed by working with couples/families/people with HD and populations classed as hard to reach, there were still several outstanding questions which a review board could raise concerns about. However, the review also strongly indicated an answer to this conundrum – talk with your population, ask their opinion, after all you’re studying and working alongside them.

Results/Conclusion A precis of questions evolved from the review and has been put together for the UK HDA patient involvement group ‘HD Voice’ to comment on. Their critique and ideas will be integrated into the ethics application prior to submission. This work is ongoing at the time of writing this abstract.


  1. . Allbutt H. Ethnography and the ethics of undertaking research in different mental healthcare settings. Journal of Psychiatric & Mental Health Nursing2010;17(3):210–216.

  2. . American Anthropological Association. 1998-last update, Code of Ethics2018. Available:

  3. . Fisher A, Lavis A, Greenfield S, Rickards H. Is social cognition in huntington’s disease more than just a marker for disease progression? An exploration of social functioning in the day-to-day experiences of people with HD, their companions and friends 2018.

  4. . Gabb J. Home truths: Ethical issues in family research. Qualitative Research2010;10(4):461–478.

  5. . World Medical Association. 2013-last update, The Helsinki DeclarationFebruary, 2016. Available:

  • Patient involvement
  • research
  • ethics
  • ethnography

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