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

Boylan, Anne-Marie and Locock, Louise and Machin, Laura Louise (2019) From waste product to blood, brains and narratives:developing a pluralist sociology of contributions to health research. Sociology of Health and Illness, 41 (3). pp. 585-600. ISSN 0141-9889

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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.

Item Type:
Journal Article
Journal or Publication Title:
Sociology of Health and Illness
Additional Information:
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.
Uncontrolled Keywords:
/dk/atira/pure/subjectarea/asjc/2700/2719
Subjects:
ID Code:
89038
Deposited By:
Deposited On:
05 Dec 2017 09:22
Refereed?:
Yes
Published?:
Published
Last Modified:
19 Sep 2020 04:54