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Vulnerable participants in health research: methodological and ethical challenges

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  • Institut for Didaktik
Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research, in which purpose and methods often deviate from medical research. The guidelines appear to be instrumental and over simplistic representations of the often “messy” realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics, leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how you can illuminate the needs and problems of vulnerable patients and - at the same time - respect their integrity without exposing them unnecessarily. The article illuminates the interactional construction of roles and relationships and how they affect the contextual construction of vulnerability. In this respect, we demonstrate that both patients and researchers are at risk of being vulnerable. In conclusion, we outline and advocate for a more contextualized approach and empirically-informed ethics to informed consent in research with potentially vulnerable participants.
OriginalsprogEngelsk
TidsskriftJournal of Social Work Practice
Vol/bind25
Nummer3
Sider (fra-til)365-376
Antal sider11
ISSN0265-0533
DOI
StatusUdgivet - 2011

    Forskningsområder

  • vulnerable participants, ethics, informed consent, health research, Forskningsmetode

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