1998Disability & SocietyRequires access

Public Research, Private Concerns: Ethical issues in the use of open-ended interviews with people who have learning difficulties

John Swain, Bob Heyman, Maureen Gillman

Open publisher page 97 citations

Abstract

This paper is an exploration of the ethical dilemmas in open-ended interview research with people with learning difficulties. We address the possibility that research which gives voice to the experience of abuse, from the viewpoint of the victim, can itself be abusive. Such research is justified in terms of empowering, illuminating and disseminating the meaning that participants give to their lives. Yet every stage of the process raises complex ethical issues when research participants are drawn from vulnerable and powerless groups in society, and the focus for investigation can be deemed private. As a vehicle for our exploration, we reflect on our ethical dilemmas in researching the story of a young woman who has learning difficulties and has been the victim of various forms of abuse. We argue that ethical dilemmas cannot be overcome solely by Ethical Codes or even predetermined 'good practice'. They are integral to the whole research process and necessitate continuous explicit examination of decision making processes within research.

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What this paper is about

This paper is an exploration of the ethical dilemmas in open-ended interview research with people with learning difficulties. We address the possibility that research which gives voice to the experience of abuse, from the viewpoint of the victim, can itself be abusive. Such research is justified in terms of empowering, illuminating and disseminating the meaning that participants give to their lives. Yet every stage of the process raises complex ethical issues when research participants are drawn from vulnerable and powerless groups in society, and the focus for investigation can be deemed private. As a vehicle for our exploration, we reflect on our ethical dilemmas in researching the story of a young woman who has learning difficulties and has been the victim of various forms of abuse. We argue that ethical dilemmas cannot be overcome solely by Ethical Codes or even predetermined 'good practice'. They are integral to the whole research process and necessitate continuous explicit examination of decision making processes within research.

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OpenAlex reports 97 citations for this work. Citation counts describe recorded attention and do not establish research quality.

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Available abstract

This paper is an exploration of the ethical dilemmas in open-ended interview research with people with learning difficulties. We address the possibility that research which gives voice to the experience of abuse, from the viewpoint of the victim, can itself be abusive. Such research is justified in terms of empowering, illuminating and disseminating the meaning that participants give to their lives. Yet every stage of the process raises complex ethical issues when research participants are drawn from vulnerable and powerless groups in society, and the focus for investigation can be deemed private. As a vehicle for our exploration, we reflect on our ethical dilemmas in researching the story of a young woman who has learning difficulties and has been the victim of various forms of abuse. We argue that ethical dilemmas cannot be overcome solely by Ethical Codes or even predetermined 'good practice'. They are integral to the whole research process and necessitate continuous explicit examination of decision making processes within research.

Key concepts: Meaning (existential), Process (computing), Psychology, Engineering ethics, Ethical code, Public relations, Sociology, Political science

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Public Research, Private Concerns: Ethical issues in the use of open-ended interviews with people who have learning difficulties — Research Paper | ScholarLens