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Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking

A series of governance issues currently surrounds the multiple uses and multiple users of dried blood spots (DBS) for research purposes. Internationally there is a discussion on storing DBS resulting from newborn screening for public health and using them as the basis for large biobank-like collecti...

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Autores principales: Douglas, Conor M.W., van El, Carla G., Faulkner, Alex, Cornel, Martina C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Croatian Medical Schools 2012
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3428828/
https://www.ncbi.nlm.nih.gov/pubmed/22911534
http://dx.doi.org/10.3325/cmj.2012.53.390
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author Douglas, Conor M.W.
van El, Carla G.
Faulkner, Alex
Cornel, Martina C.
author_facet Douglas, Conor M.W.
van El, Carla G.
Faulkner, Alex
Cornel, Martina C.
author_sort Douglas, Conor M.W.
collection PubMed
description A series of governance issues currently surrounds the multiple uses and multiple users of dried blood spots (DBS) for research purposes. Internationally there is a discussion on storing DBS resulting from newborn screening for public health and using them as the basis for large biobank-like collections to facilitate biomedical research. If such a transformation were to be formalized, then DBS would sit at the intersection of care (ie, public health) and research, with the mechanisms through which such a collection could be managed not totally self-evident. What is more, a DBS collection raises questions about the fuzzy boundaries between privacy and anonymity; how to control or define quality control uses of DBS; medical vs nonmedical uses; as well as benefit sharing and stakeholder involvement. Our goal here is to explore some of the key questions relating to DBS governance by way of the bio-objects and bio-objectification concepts. By embracing – rather than resisting to – the blurring of boundaries and problems in categorization that have come to characterize bio-objects and bio-objectification processes recently described in this journal, we attempt to highlight some issues that might not be currently considered, and to point to some possible directions to go (or avoid). Building from our knowledge of the current DBS situation in the Netherlands, we outline questions concerning the uses, management, collection, and storage of DBS.
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spelling pubmed-34288282012-08-30 Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking Douglas, Conor M.W. van El, Carla G. Faulkner, Alex Cornel, Martina C. Croat Med J Bio-Objects A series of governance issues currently surrounds the multiple uses and multiple users of dried blood spots (DBS) for research purposes. Internationally there is a discussion on storing DBS resulting from newborn screening for public health and using them as the basis for large biobank-like collections to facilitate biomedical research. If such a transformation were to be formalized, then DBS would sit at the intersection of care (ie, public health) and research, with the mechanisms through which such a collection could be managed not totally self-evident. What is more, a DBS collection raises questions about the fuzzy boundaries between privacy and anonymity; how to control or define quality control uses of DBS; medical vs nonmedical uses; as well as benefit sharing and stakeholder involvement. Our goal here is to explore some of the key questions relating to DBS governance by way of the bio-objects and bio-objectification concepts. By embracing – rather than resisting to – the blurring of boundaries and problems in categorization that have come to characterize bio-objects and bio-objectification processes recently described in this journal, we attempt to highlight some issues that might not be currently considered, and to point to some possible directions to go (or avoid). Building from our knowledge of the current DBS situation in the Netherlands, we outline questions concerning the uses, management, collection, and storage of DBS. Croatian Medical Schools 2012-08 /pmc/articles/PMC3428828/ /pubmed/22911534 http://dx.doi.org/10.3325/cmj.2012.53.390 Text en Copyright © 2012 by the Croatian Medical Journal. All rights reserved. http://creativecommons.org/licenses/by/2.5/ This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Bio-Objects
Douglas, Conor M.W.
van El, Carla G.
Faulkner, Alex
Cornel, Martina C.
Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title_full Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title_fullStr Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title_full_unstemmed Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title_short Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
title_sort governing biological material at the intersection of care and research: the use of dried blood spots for biobanking
topic Bio-Objects
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3428828/
https://www.ncbi.nlm.nih.gov/pubmed/22911534
http://dx.doi.org/10.3325/cmj.2012.53.390
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