Bioethics Beyond Altruism Donating and Transforming Human Biological Materials

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232 G. O’Brien


(appropriate) levels of gratitude. What I, instead, encountered were
many different stories, all replete with the struggle of the ‘ordinariness
of the day-to-day’ (Kierans 2005 : 343). As Kierans ( 2005 ) suggests,
these are complex stories, wrought by the experience of life-threaten-
ing illness, biomedical intervention and outcomes. Importantly, these
are stories that reflect the unique circumstances of the individuals con-
cerned and the unique meanings made of these experiences, rather than
stories that represent the (mere) recounting of an illness trajectory. I
grew to understand that not all organ recipients recognise transplan-
tation as the gift-of-life. The move away from a generic model of ‘the’
transplantation experience provides a more nuanced understanding of
transplantation, its influence on the lives of those who experience it and
also that of gratitude (and other emotions) in this context.
Gift-of-life discourse marginalises the voices of those who are any-
thing less than straightforwardly grateful for their transplant. These
voices may be those of the most uncertain and vulnerable of transplant
recipients. Their silencing can be powerfully consequential for the ways
in which they make meaning of their transplant experience and, ulti-
mately, their ongoing physical and psychological health. The narra-
tives of some participants were not marked by gratitude but, instead,
by emotions such as shame and anger. These emotions appeared to be
driven by some of the devastating effects of transplantation, such as
the inability to work or find employment, the financial difficulties that
ensued from this and the effects of these difficulties on the lives of recip-
ients and their families. Sanctioned ways of encountering and speaking
about transplantation exist, and the voicing of aspects of transplantation
that do not conform to gift-of-life discourse represents a social taboo.
There is thus little leeway for the contingencies of recipients’ lives, and
the emotions elicited by them, to be acknowledged and lived with.
Drawing on a range of studies concerned with the delimiting potential
of gift-of-life discourse, Shaw (2015a) has proposed that a flexible range
of explanatory concepts replace the rigid gift-of-life conceptualisation
of organ donation and transplantation that currently prevails. Shaw’s
expanded ‘conceptual toolkit’ includes ‘the unconditional gift, the gift
relation, gift exchange, body project and body work’ (2015a: 952) and
provides a broader social and moral milieu in which organ donors and

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