Journal article
Biosamples as gifts? How participants in biobanking projects talk about donation
- Abstract:
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Background
In the UK, altruism has featured explicitly as an underpinning principle for biobanking. However, conceptualizing donation as altruistic downplays the role of reciprocity and personal or family benefit.
Objective
To investigate how biosample donors talk about their donation and whether they regard samples as ‘gifts’.
Methods
In this qualitative study, 21 people, both healthy volunteers and people with health conditions, who had been invited to give biosamples took part in semi-structured narrative interviews. The data were transcribed verbatim and thematically analysed.
Results
The term ‘gift’ was considered appropriate by some, but it also evoked puzzlement, especially in relation to ‘waste’ material (e.g. urine or tumour samples). Whilst ‘giving’ or ‘donating’ were commonly mentioned, the noun ‘gift’ signified something more special and deliberate. Analysis suggested biosamples could be interpreted as gifts in several different ways, including unreserved gift; reciprocal gift; collective gift; unwanted/low-value gift; and gift as an exaggeration.
Discussion and conclusions
Although people describe a network of exchange consistent with anthropological understandings of gift relationships, lay (and biomedical) understandings of the term ‘gift’ may differ from anthropological definitions. For donors (and researchers), value is attached to the information derived from the sample, rather than the sample itself. Consequently, when asking people for biosamples, we should avoid using the term ‘gift’. Acknowledging the value of participation and the information the sample holds may mean more to potential donors.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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- Files:
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(Preview, Version of record, pdf, 133.7KB, Terms of use)
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- Publisher copy:
- 10.1111/hex.12376
Authors
- Funding agency for:
- Boylan, A
- Publisher:
- Wiley
- Journal:
- Health Expectations More from this journal
- Volume:
- 19
- Issue:
- 4
- Pages:
- 805-816
- Publication date:
- 2015-06-12
- Acceptance date:
- 2015-05-12
- DOI:
- EISSN:
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1369-7625
- Language:
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English
- Keywords:
- Pubs id:
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528087
- UUID:
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uuid:077bb773-89ea-42f3-a421-c1cfc2aacb24
- Local pid:
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pubs:528087
- Deposit date:
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2015-05-12
- ARK identifier:
Terms of use
- Copyright holder:
- Locock and Boylan
- Copyright date:
- 2015
- Rights statement:
- © 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
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