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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Final published version
Licence: CC BY: Creative Commons Attribution 4.0 International License
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
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 -