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Biosamples as gifts? How participants in biobanking projects talk about donation

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...

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Detalles Bibliográficos
Autores principales: Locock, Louise, Boylan, Anne‐Marie R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5152721/
https://www.ncbi.nlm.nih.gov/pubmed/26072951
http://dx.doi.org/10.1111/hex.12376
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author Locock, Louise
Boylan, Anne‐Marie R.
author_facet Locock, Louise
Boylan, Anne‐Marie R.
author_sort Locock, Louise
collection PubMed
description 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.
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spelling pubmed-51527212016-12-12 Biosamples as gifts? How participants in biobanking projects talk about donation Locock, Louise Boylan, Anne‐Marie R. Health Expect Original Research Papers 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. John Wiley and Sons Inc. 2015-06-12 2016-08 /pmc/articles/PMC5152721/ /pubmed/26072951 http://dx.doi.org/10.1111/hex.12376 Text en © 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 (http://creativecommons.org/licenses/by-nc-nd/4.0/) 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.
spellingShingle Original Research Papers
Locock, Louise
Boylan, Anne‐Marie R.
Biosamples as gifts? How participants in biobanking projects talk about donation
title Biosamples as gifts? How participants in biobanking projects talk about donation
title_full Biosamples as gifts? How participants in biobanking projects talk about donation
title_fullStr Biosamples as gifts? How participants in biobanking projects talk about donation
title_full_unstemmed Biosamples as gifts? How participants in biobanking projects talk about donation
title_short Biosamples as gifts? How participants in biobanking projects talk about donation
title_sort biosamples as gifts? how participants in biobanking projects talk about donation
topic Original Research Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5152721/
https://www.ncbi.nlm.nih.gov/pubmed/26072951
http://dx.doi.org/10.1111/hex.12376
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