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 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.
VU University Medical Center Amsterdam, EMGO Institute for Health and Care Research, Section Community Genetics, Amsterdam, the Netherlands. cm.douglas@vumc.nl
Conor M W
CM
Douglas
Carla G
CG
van El
Alex
A
Faulkner
Martina C
MC
Cornel
D035843:Biomedical Research; D001771:Blood Banks / Q000941:ethics / Q000458:organization & administration* / Q000592:standards*; D001800:Blood Specimen Collection / Q000941:ethics / Q000592:standards*; D003219:Confidentiality; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent; D015997:Neonatal Screening; D009426:Netherlands; D017410:Practice Guidelines as Topic