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, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient-reported outcome measures, record-linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a 'sociology of research contributions' might better capture this complexity.

Disposalscapes: ‘Estranged’ Limbs after Amputation

“…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.…”

“…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.…”

“…This is perhaps the ‘odd side’ that Slatman (2014) refers to; the estranged limb is still seen as part of the body from which it has subsequently been detached. There is then the notion of ‘the importance of bodily dignity and a sense that the body is the self, requiring respect and shielding from inappropriate scrutiny’ (Boylan et al, 2019: 593). Thus, moving beyond the Cartesian interpretation of the body, and viewing it through the double-sided experience (as subject and object) (see Slatman and Widdershoven, 2010), the amputated part may well still be viewed by patients as part of the self.…”

Morbid curiosity? Discussion of the disposal of amputated limbs on online question and answer sites

“…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.…”

Better governance starts with better words: why responsible human tissue research demands a change of language

“…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.…”