To Report or Not to Report: The Ethical Complexity Facing Researchers When Responding to Disclosures of Harm or Illegal Activities During Fieldwork with Adults with Intellectual Disabilities

ABSTRACT

This article draws attention to the ethical complexity researchers may be confronted with during fieldwork should an adult participant with intellectual disabilities disclose that harm or an illegal activity is occurring or has occurred in the past. The need to gain ethical approval and the positioning of people with intellectual disabilities as vulnerable within ethics review procedures can result in the adoption of paternalistic approaches as researchers are encouraged to break confidentiality to report concerns to other professionals. Whilst this may fulfil a researcher’s duty to ensure no harm occurs to participants, if it takes place against the participant’s wishes it may also violate participant autonomy, reinforce unequal relations of power, and may unwittingly contribute to subsequent harm occurring. Whilst the article begins from our experience as two UK-based researchers working with people with intellectual disabilities, it draws on existing literature and guidelines to expose the ethical tensions which may be encountered. It is intended that the paper acts as a starting point for researchers wishing to reflect on their practice and ethical decision-making, whilst contributing to wider debates on the position of people with intellectual disabilities within society.

KEYWORDS:

• Research ethics committees
• confidentiality
• intellectual disability disclosure
• harm

Disclosure Statement

No potential competing interest was reported by the authors

Additional information

Notes on contributors

Francesca Ribenfors

Francesca Ribenfors is a qualitative researcher in the Department of Social Care and Social Work, Manchester Metropolitan University, UK. Her research interests focus on people with intellectual disabilities and their families, and inequalities within health and social care systems.

Lauren Blood

Lauren Blood is a research and evaluation officer at the National Development Team for Inclusion, UK. She is experienced in qualitative and quantitative methods and has experience working on research projects relating to intellectual disabilities, and mental health.