Ethical dilemmas around anonymity and confidentiality in longitudinal research data sharing: the case of Dan

Ethical dilemmas around anonymity and confidentiality in longitudinal research data sharing: the case of Dan内容摘要：

Chapter prepared for: Tolich, M. Qualitative Research Ethics in Practice, Left Coast Press ETHICAL DILEMMAS AROUND ANONYMITY AND CONFIDENTIALITY IN LONGITUDINAL RESEARCH DATA SHARING: THE CASE OF DAN1 Rosalind Edwards, Professor of Sociology and Co-Director of the ESRC National Centre for Research Methods, University of Southampton, UK; and Susie Weller, Reader, Weeks Centre for Social and Policy Research, London South Bank University, UK. Introduction This chapter is concerned with ethical practice around anonymity and confidentiality in the specific context of data sharing and secondary use of longitudinal research data in the United Kingdom (UK). With respect to data sharing for secondary use, all publicly-funded research data is regarded as a public good, produced in the public interest, and therefore to be made as openly available as possible.2 In this context, the concepts of anonymity and confidentiality usually occur in tandem in ethics guidelines produced by funding bodies and disciplinary associations. They are concerned with disguising the identity of people who have taken part in research from secondary users of data sets (outside of the original researcher or research team), whether quantitative or qualitiative, and thus protecting the information that participants have disclosed from being associated with them (see e.g. section 4.7 of the Social Research Association’s and sections 35- 1 This chapter draws on and substantially reworks material from Edwards, R. and Weller, S. (2013) ‘The death of a participant: moral obligation, consent and care in qualitative longitudinal research’ (pp.125136), in K. te Riele and R. Brooks (eds) Negotiating Ethical Challenges in Youth Research, Abingdon: Routledge. Our thanks to the editors and publisher for their agreement to this reuse. Ros Edwards is also grateful to The Leverhulme Trust for funding a three-month International Academic Fellowship spent at the University of Otago, which stimulated a rethinking of the original published material from a different angle. 2 See, for example, the Research Data Policy of the Economic and Social Research Council (ESRC), which funded the research project that we discuss in this chapter. 1 38 of the British Sociological Association’s ethical guidelines. 3 We explore these concerns through a particular focus on a piece of qualitative longitudinal work that we have been conducting, tracking the lives of around 50 young people in Great Britain for around a decade. We will look at the issues that arose for us following the death of one of our participants who was killed in a road traffic accident, which involved not only the sharing of his research material through archiving for re-use by secondary analysts, but also dilemmas of sharing some of his data with his family. Some of the dilemmas around anonymity and privacy in family and secondary analyst data sharing that we faced were amplified by the long term nature of our study, as we experienced a growing sense of interest in, emotional connection with and obligation towards our project participants and their families. Indeed, this chapter fills a gap where we consider some of the implications for anonymity and confidentiality of producing data for reuse from the perspective of the original researchers. We also raise the issue of anonymity and confidentiality in the context of discussing our research experiences, a form of auto-ethnography. We begin our discussion with a brief consideration of what we mean by anonymity and confidentiality, particularly in the context of debates about sharing research data for reuse. Anonymity and Confidentiality in Data Sharing Ethical conduct refers to moral values and behaviour; it is a foundation on which the legitimacy of social research rests. Keystones of ethical consideration in all research contexts include issues of anonymity and confidentiality, both in the creation and use of primary data, and when it comes to data sharing and secondary use of that data. Anonymity and confidentiality are often run together as if they were the same or interchangeable ethical issues, but they are distinct concepts and practices (Sieber and Tolich 2013; Wiles 2013). Nonetheless, as we discuss, they tend to be bound up with each other in UK discussions, including in relation to qualitative social research, as well as in the case of sharing longitudinal data. Largely, they are not concerned with the 3 See http://the-sra.org.uk/wp-content/uploads/