2018
DOI: 10.1111/1467-9566.12715
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From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research

Abstract: 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, co… Show more

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Cited by 7 publications
(15 citation statements)
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References 33 publications
(71 reference statements)
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“…As Boylan et al (2019) usefully note, there is a spectrum of how patients feel about donating parts of their bodies, ranging from active desire to lose diseased tissue (such as tumours), ambivalence about donating urine, value in blood donation and greater emotional attachment to particular elements, such as eyes or the brain. So too we could see from the above a spectrum of feelings and responses around disposal, ranging from gratitude for the loss of the part – ‘Personally, I didn’t care [about its disposal] I was happy to have it cut off’ (PPI survey participant) – in the case of elective amputations to grief and despair for the estranged parts lost through trauma or disease.…”
Section: Resultsmentioning
confidence: 99%
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“…As Boylan et al (2019) usefully note, there is a spectrum of how patients feel about donating parts of their bodies, ranging from active desire to lose diseased tissue (such as tumours), ambivalence about donating urine, value in blood donation and greater emotional attachment to particular elements, such as eyes or the brain. So too we could see from the above a spectrum of feelings and responses around disposal, ranging from gratitude for the loss of the part – ‘Personally, I didn’t care [about its disposal] I was happy to have it cut off’ (PPI survey participant) – in the case of elective amputations to grief and despair for the estranged parts lost through trauma or disease.…”
Section: Resultsmentioning
confidence: 99%
“…The choice to ‘reimagine’ a new form of value for the limb through disposal practices could offer comfort to the patient, allowing them to feel the amputation is not ‘in vain’ as the limb has a new life, and is not fully ‘gone’ from the world. This would echo the way that people feel about donation of other parts or tissue (Boylan et al, 2019) and how amputees could feel about their estranged limbs becoming part of research, where they might ask whether their limb has contributed to anything ‘worthwhile’ (Gallagher and Maclachlan, 2000: 200). However, in the example of limb stockpiling, patients may feel that their limbs disposal has been ‘exploited’ in the pursuit of financial gain; that their loss has become monetised and capitalised upon.…”
Section: Patient Choice In Disposalmentioning
confidence: 99%
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“…44 Indeed, narratives of bio-intimacy 45 within donation are now being seen by some as part of biological citizenship and hierarchies of donation could be a useful means to frame such considerations. 46 Within such hierarchies, limbs, which are not seen as ‘reusable’, are perhaps understandably consigned to notions of ‘waste’, but this is itself not necessary unproblematic, as will be discussed within this theme.…”
Section: Narrating the Amputate As Wastementioning
confidence: 99%
“…Both in biobank practice and academia, the provision of tissue is phrased as a 'donation' or 'gift' , and tissue providers are referred to as 'donors' [20][21][22][23][24][25][26]. In this paper, we argue that this language pervading the field of human tissue research is one of the reasons why there remains such a strong focus on informed consent in governance frameworks for biobanks, in spite of the extensive calls for more participatory approaches to governance measures that go beyond the consent procedure.…”
Section: Introductionmentioning
confidence: 99%