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    Rights statement: This is the peer reviewed version of the following article: Boylan, A. R., Locock, L. and Machin, L. (2018), From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research. Sociol Health Illn. . doi:10.1111/1467-9566.12715 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12715 This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

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From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research

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<mark>Journal publication date</mark>1/03/2019
<mark>Journal</mark>Sociology of Health and Illness
Issue number3
Volume41
Number of pages16
Pages (from-to)585-600
Publication StatusPublished
Early online date1/03/18
<mark>Original language</mark>English

Abstract

The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation.

These conceptual themes are: the language of ‘donation’; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation.

We call for a reconceptualization of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient-reported outcome measures, record-linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a ‘sociology of research contributions’ might better capture this complexity.

Bibliographic note

This is the peer reviewed version of the following article: Boylan, A. R., Locock, L. and Machin, L. (2018), From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research. Sociol Health Illn. . doi:10.1111/1467-9566.12715 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12715 This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.