Ethical tensions surrounding ‘third-party disclosure’ by participants: Lessons from participatory health research in Eswatini

Michelle R. Brear, Pinky N. Shabangu, Karin Hammarberg, Jane Fisher

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Third-party disclosure by participants is inherent to much global health research. It presents ethical tensions with respecting the autonomy and privacy of non-consenting individuals whose data are disclosed but is neglected in ethics guidelines. Our aim was to describe and ethically reflect on, third party disclosure in a community-participatory demographic and health survey (DHS) implemented within participatory health research (PHR) about community-based care of children affected by AIDS in Eswatini. We collected DHS data and analysed it statistically. We studied the PHR process and outcomes ethnographically and analysed the data interpretively, using theories that conceptualise secrecy as relational and power-laden. We found that third parties’ data were disclosed by DHS respondents (typically women), including data about health conditions, abuse perpetration and being a caregiving burden. Ethnographic findings suggested that some third parties may not have consented to us collecting their data. However, respecting third parties’ autonomy and privacy presents ethical tensions related to silencing survey respondents and impairing knowledge creation. To minimise the ethical tensions surrounding third-party disclosure researchers can analyse risks, benefits and power dynamics and extend their ethical responsibilities to protect participants to also protect non-participants, and from data collection to also include reporting.

Original languageEnglish
Number of pages13
JournalGlobal Public Health
DOIs
Publication statusAccepted/In press - 2021

Keywords

  • autonomy
  • demographic and health surveys
  • privacy
  • Research ethics
  • third-party disclosure

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