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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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From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research. / Boylan, Anne-Marie; Locock, Louise; Machin, Laura Louise.

In: Sociology of Health and Illness, Vol. 41, No. 3, 01.03.2019, p. 585-600.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

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Boylan A-M, Locock L, Machin LL. From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research. Sociology of Health and Illness. 2019 Mar 1;41(3):585-600. Epub 2018 Mar 1. doi: 10.1111/1467-9566.12715

Author

Boylan, Anne-Marie ; Locock, Louise ; Machin, Laura Louise. / From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research. In: Sociology of Health and Illness. 2019 ; Vol. 41, No. 3. pp. 585-600.

Bibtex

@article{538ad95a6dc042e9997020eeb22c473e,
title = "From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research",
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 {\textquoteleft}donation{\textquoteright}; 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 {\textquoteleft}sociology of research contributions{\textquoteright} might better capture this complexity. ",
keywords = "blood donation, biobanks, narratives, organ donation, secondary analysis",
author = "Anne-Marie Boylan and Louise Locock and Machin, {Laura Louise}",
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.",
year = "2019",
month = mar,
day = "1",
doi = "10.1111/1467-9566.12715",
language = "English",
volume = "41",
pages = "585--600",
journal = "Sociology of Health and Illness",
issn = "0141-9889",
publisher = "Blackwell Publishing Ltd",
number = "3",

}

RIS

TY - JOUR

T1 - From waste product to blood, brains and narratives

T2 - developing a pluralist sociology of contributions to health research

AU - Boylan, Anne-Marie

AU - Locock, Louise

AU - Machin, Laura Louise

N1 - 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.

PY - 2019/3/1

Y1 - 2019/3/1

N2 - 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.

AB - 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.

KW - blood donation

KW - biobanks

KW - narratives

KW - organ donation

KW - secondary analysis

U2 - 10.1111/1467-9566.12715

DO - 10.1111/1467-9566.12715

M3 - Journal article

VL - 41

SP - 585

EP - 600

JO - Sociology of Health and Illness

JF - Sociology of Health and Illness

SN - 0141-9889

IS - 3

ER -