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From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research
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 curren...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6446731/ https://www.ncbi.nlm.nih.gov/pubmed/29493796 http://dx.doi.org/10.1111/1467-9566.12715 |
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author | Boylan, Anne‐Marie R. Locock, Louise Machin, Laura |
author_facet | Boylan, Anne‐Marie R. Locock, Louise Machin, Laura |
author_sort | Boylan, Anne‐Marie R. |
collection | PubMed |
description | 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 reconceptualisation 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. |
format | Online Article Text |
id | pubmed-6446731 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-64467312019-04-10 From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research Boylan, Anne‐Marie R. Locock, Louise Machin, Laura Sociol Health Illn Special Section 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 reconceptualisation 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. John Wiley and Sons Inc. 2018-03-01 2019-03 /pmc/articles/PMC6446731/ /pubmed/29493796 http://dx.doi.org/10.1111/1467-9566.12715 Text en © 2018 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL. This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Special Section Boylan, Anne‐Marie R. Locock, Louise Machin, Laura From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title | From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title_full | From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title_fullStr | From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title_full_unstemmed | From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title_short | From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
title_sort | from waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research |
topic | Special Section |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6446731/ https://www.ncbi.nlm.nih.gov/pubmed/29493796 http://dx.doi.org/10.1111/1467-9566.12715 |
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