From waste product to blood, brains and narratives
Developing a Pluralist Sociology of Contributions to Health Research
Bibliographic Data
| ID | 2249374 |
|---|---|
| Authors | Anne‐marie Boylan (0000-0001-8187-0742, University of Oxford, corresponding author), Anne‐Marie R Boylan (Health Experiences Research Group (HERG), Nuffield Department of Primary Care, Health Sciences University of Oxford UK), Louise Locock (0000-0002-8109-1930, Health Services Research Unit University of Aberdeen UK), Laura L Machin (0000-0002-6717-959X, Lancaster University), Laura Machin (0009-0008-2217-9810, Lancaster Medical School Lancaster University UK) |
| Year | 2019 |
| Volume | 41 |
| Issue | 3 |
| Pages | 585-600 |
| Publication date | 2019-03-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Sociology of Health & Illness (JOURNAL) |
| Journal identifiers | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.12715 |
| PMID | 29493796 |
| OpenAlex | W2782530660 |
| Language | EN |
| Citations received | 1 |
| References cited | 31 |
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
Conceptual framework · Donation · Meaning (existential · Narrative · Narrative inquiry · Political science · Product (mathematics · Psychotherapist · Public relations · Social science · Sociology · Value (mathematics · Computer Science · Ethics in Clinical Research · Health Policy Implementation Science · Law · Mental Health and Patient Involvement · Psychology · Social Psychology
Dynamic consent
Biotechnology and Monstrosity
Reworking Qualitative Data
Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment
Biosamples as gifts? How participants in biobanking projects talk about donation
The power of symbolic capital in patient and public involvement in health research
“It’s No Skin off My Nose”
Tissue donation to biobanks
Gift Relationships in Genetics Research
National Biobanks
Science is really needed—that’s all I know
Phenomenology of Perception
Commodification of Body Parts
Bodies for Sale - Whole or in Parts
The Notion of the Gift in the Donation of Body Tissues
Who is my stranger? Origins of the gift in wartimeLondon, 1939-45
Expanding the conceptual toolkit of organ gifting
Biographical value
| Unique citing works | 1 |
|---|---|
| Citations per year | 0,2 |
| Citation span | 2021 - 2021 (1) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 1 |