Sociology of Health & Illness Vol. 29 No. 7 2007 ISSN 0141–9889, pp.

1023–1042
doi: 10.1111/j.1467-9566.2007.01031.x
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Consent and nothing but consent? The organ

retention scandal
Valerie M. Sheach Leith
School of Applied Social Studies, The Robert Gordon University, Aberdeen

Abstract The organ retention scandal arose in the UK in the autumn of 1999 when
knowledge of the practice of organ and tissue retention after post-mortem
for subsequent diagnostic, teaching, audit and research purposes fully entered
the public domain. Many families were shocked and distressed to realise that
by allowing a post-mortem on their relative or child they were also deemed to
have agreed to the long-term retention of organs and tissues and thus had buried
or cremated, as they perceived it, not a ‘whole’ body but an ‘empty shell’.
Subsequently, informed consent was placed at the centre of recommendations
for reform, now given expression in the Human Tissue Act (2004). Through a
discourse analysis of the documentary evidence produced in the wake of the organ
retention scandal, I argue that the emphasis on informed consent masks concerns
about body wholeness. In addition, whilst informed consent is posited as key in
‘balancing’ the rights of the individual over the needs of medical science, this
position is tempered by the concurrent presence of notions of the gift relationship
and post-mortem citizenship. Incorporating these notions alongside the discourse
of consent also renders concerns about the commodification of the body less
acute.

Keywords: organ retention scandal, body wholeness, gift relationship, post-mortem

citizenship, the Human Tissue Act (2004)

For the foreseeable future . . . the medical management of the dead and dying will
doubtless continue to be fashioned as it has throughout the twentieth century: in relation
to the possibilities and constraints of scientific, professional, commercial, political, legal,
religious and social interests and cultural norms – in a deeply furrowed dialectic between
that which is possible and that which appalls (Cooter 2003: 484).

Introduction

In relation to the dead body, nowhere is this dialectic more apparent than in the furore
surrounding the UK organ retention scandal. This scandal arose in the autumn of 1999
when it became public knowledge that organs and tissues had been routinely retained after
post-mortem, predominantly from the bodies of young children and infants, for subsequent
diagnostic, teaching, audit and research purposes. Post-mortem practice falls into two
distinct types, a coroner’s post-mortem (or in Scotland1 a procurator fiscal’s post-mortem)
or a hospital post-mortem.2 In English law at that time, judicial post-mortems were carried
© 2007 The Author. Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.
Published by Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA
1024 Valerie M. Sheach Leith

out under the auspices of the Coroners Rules (1984) and the Coroners Act (1988). These
specify the circumstances in which a death should be reported to the coroner. The coroner
then decides whether a post-mortem is necessary. For the purposes of this article, it is
important to note first, that consent is not required for a coroner’s post-mortem and
secondly, that under the Coroners Rules (1984) and the Coroners Act (1988) and subsequent
amendments to this legislature3, the retention of organs and tissues is only permitted
for the express purpose of establishing the cause of death. In 2001, the Royal College of
Pathologists noted that in the UK, some 90 per cent of post-mortems were conducted at
the request of the coroner or procurator fiscal (RCOP CMO 101 (2001)).
Hospital post-mortems are clearly less common. However, ‘a substantial proportion, if
not the majority of consented post mortems . . . in the UK have been fetal or perinatal cases’
(BPPA CMO 241 (2001)). When an individual dies in hospital, clinicians, or indeed rela-
tives can request a post-mortem, which it is believed, may benefit the individual’s family
and/or future patients. Until the introduction of the Human Tissue Act (2004)4, hospital
post-mortems were regulated by the Human Tissue Act (1961). This Act (1961) required
that lack of objection from relatives be established, rather than specific consent (as it is now
understood) elicited. Resulting practice failed to meet the needs of relatives and contemporary
ethical standards. Regardless of the type of post-mortem conducted, parents and other relatives
either did not know that organs and tissues were removed from the body at post-mortem,
or if they did, understood them to be returned to the body prior to burial or cremation.
In the aftermath of the revelations about organ and tissue retention, parents expressed
two areas of concern. First, they believed that they had not given their ‘informed consent’
for organs and tissue to be retained and secondly, a significant number of parents were also
concerned about the body wholeness of their child. They felt they had buried or cremated,
not a ‘whole’ body, but an ‘empty shell’. In response to these concerns, the state instigated
several inquiries to investigate post-mortem practice.5 In addition, the Chief Medical Officer
(CMO) for England, Professor Liam Donaldson, chaired a summit (January 2001) aimed
at informing and improving future practice. Subsequently, the Retained Organs Commission
(ROC) was formed to oversee the return of organs and tissues to families who had requested
this, but also to seek views on a way forward, which would restore public confidence and
highlight the need for organ and tissue retention.6 In July 2002, responding to the frequent
calls for legislative change, the Department of Health issued the consultation document
Human Bodies, Human Choices. These initiatives fed into and informed the introduction
of the Human Tissue Act (2004) in which consent is posited as key. Beyond the UK,
concerns about organ retention were also expressed in Southern Ireland, New South Wales,
Australia and New Zealand. Here, however, I leave cross-cultural comparisons aside, focusing
solely on events in the UK.
In this article, I seek to elucidate the range of discourses employed by the parties
involved in the organ retention scandal. The discourses drawn upon were not necessarily
competing or contradictory, nor did they always coalesce simply around specific groups or
interests. The discourse of informed consent for example, was articulated by all the parties
involved. There were however, shifting power relations over the course of the organ reten-
tion scandal. At the outset, there was clearly disagreement between the different groups as
to the causes of the organ retention scandal. For example, parental concerns were given
considerable prominence in the Bristol Royal Infirmary Inquiry Interim Report (2000) and
the Royal Liverpool Children’s Inquiry Report (2001) and opprobrium was heaped upon
the medical profession for their failure to elicit informed consent and perceived paternalistic
practices. In response, the medico-scientific community vigorously defended the need for
post-mortems and the retention of organs and tissues, arguing that their actions had been
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 The organ retention scandal 1025

motivated by a wish both to spare families further distress and to advance medical know-
ledge for the benefit of the health of the nation (RCOP CMO 101 (2001)). The state’s
strong criticism of the medical profession must be viewed within the wider framework of
changes to the relationship between these parties in which the autonomy of the latter is
increasingly under scrutiny (Salter 2004). As moves to bring in new regulatory legislation
progressed, the medico-scientific community was to reassert its influence by canvassing
successfully for amendments to be made to the Human Tissue Act (2004). As Foucault
(1980: 98) argues, ‘Power must be analysed as something which circulates, or rather as
something which only functions in the form of a chain. It is never localised here or there,
never in anybody’s hands, never appropriated as a commodity or piece of wealth. Power is
employed and exercised through a net-like organisation’.
Drawing then upon a discourse analysis of a variety of documents produced in the wake
of the organ retention scandal, my argument is twofold. First, whilst, as stated above,
parents themselves stressed the importance of consent, the subsequent dominance of this
discourse masks the concerns of parents who sought to restore the fragmented bodies of
their children to a physical and metaphysical wholeness. It is not argued that parents were
exclusively concerned about consent and not body wholeness or vice versa. As I discuss
below some parents were keen to stress that they would have agreed to the retention of organs
and/or tissues had they been asked at the time. My aim is to go beyond the concentrated
focus on consent, which characterised many of the responses to the organ retention scandal,
to highlight the continuing social significance of body wholeness for a considerable number
of parents, and therefore to embed post-mortem practice in its wider social context. Secondly,
whilst informed consent was posited as key in restoring to wholeness the fragmented
relationship between the lay public and the medico-scientific community, this emphasis on
autonomy was tempered by the concurrent presence of notions of the gift relationship and
what I propose to term post-mortem citizenship. Moving away from an emphasis on auto-
nomous individual rights, the concept embodies social responsibility to fellow citizens and
the advancement of medical science in relation to our own death or the death of those
close to us. Furthermore, I argue that by incorporating notions of the gift relationship and
post-mortem citizenship alongside the discourse of consent, the problematic discourses of
property and commodity as they relate to the human body are rendered less acute.

Documentary data

Taking as its point of departure a statement made by a mother during the Bristol Royal
Infirmary Inquiry that, ‘A child comes into the world complete and it should be buried
complete’ (BRI Transcript 53 (1999)), the research objective was to explore the social
significance of body wholeness in the context of the organ retention scandal. The data
comprised key ‘documentary evidence’ (Punch 1998: 190). There were two main reasons
why the research was conducted using documents. First, I was concerned that interviewing
parents might add to their distress at a time when they had already had so much taken
from them in the pursuit of knowledge. Secondly, I believed that a discourse analysis of
publicly available documents would facilitate greater insight into the discourses circulating
the discursive field in the wake of the organ retention scandal.
Gathered during the period September 1999 to March 2004, the documentary evidence
included, but was not limited to: Inquiry Reports, oral and written evidence submitted to
the Inquiries, proceedings and publications of the Chief Medical Officer’s Summit and the
Retained Organs Commission, as well as publications by professional bodies such as
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1026 Valerie M. Sheach Leith

the Royal College of Pathologists and guidelines produced by the Department of Health.
Permission from the Department of Health was gained to access a large number of the
written responses to the Human Bodies, Human Choices Consultation (2002). Apart from
the latter, all the documentary evidence was in the public domain at the time of study.
Respondents to the consultation had however given their agreement for their responses to
be made public. This documentary material included individual responses from parents
and health care professionals but also representations from organised groups (parent
groups such as the National Committee Relating to Organ Retention, the Scottish
Organisation Relating to the Retention of Organs, and Parents who have Interred Their
Young Twice, and professional groups such as the British Medical Association and the
Royal College of Midwives).
The documentary evidence was conceptualised as the representations and product (Prior
1997) of temporally and spatially specific discourses relating to the social significance of
body wholeness in the aftermath of the organ retention scandal. The data were entered into
the CAQDAS package NVivo and a discourse analysis informed by the work of Foucault
(1972, 1973, 1977) and Laclau and Mouffe (1985) was conducted. Foucault examines
the specific discourses, which he argues have produced a medicalised body (1973) and a
disciplined, docile body (1977). In addition, Laclau and Mouffe (1985: 112) note that, ‘Any
discourse is constituted as an attempt to dominate the field of discursivity, to arrest the
flow of differences, to construct a centre’. Overall, this literature emphasised the productive
nature of discourses in constructing a specific body together with the processes by which
discourse is constructed. These theoretical insights provided the analytical tools with which
to explore the discourses invoked by interested parties as they sought to (re)define what
could and could not be done with the human body, body parts and body fragments, at a time
when the medical profession’s long-established claim to the dead body had been challenged.
Analysis developed in an iterative process between the extant literature and the documen-
tary evidence. Detailed attention was paid to the context and nature of the documents, the
rhetoric used by parties to advance their claims to ‘truth’, the status accorded to particular
perspectives and the emergence of major discourses.

Beyond consent: body wholeness

Turner (1996: 6) argues that we inhabit ‘a society in which our major political and moral
problems are expressed through the conduit of the human body’. In this respect, the organ
retention scandal foregrounds several pressing issues. These relate to: the perceived break-
down in trust between the medical profession and the lay public (Lupton 1996); questions
surrounding the relationship between body and self (Burkitt 1999, Haddow 2005, Hallam
et al. 1999, Shilling 2003); anxieties surrounding advancements in medical science which
have the potential to disrupt the boundaries of the body (Richardson and Turner 2002)
and the commodification of the body (Scheper Hughes 2000, 2001, Scheper Hughes and
Wacquant 2002, Sharp 2000, Waldby 2002). As Burkitt (1999) argues:

The body is becoming an issue because, in an increasingly fragmentary world, there

is a growing desire for wholeness, for integration and for healing . . . In resisting forms of
domination and dividing practices, the body becomes a point of focus because it is
around the body, as it is located in relational networks, that individuals can integrate the
various aspects of themselves into a whole person, and can demand to be treated as such
(1999: 145).
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 The organ retention scandal 1027

In the organ retention scandal, it was the dead body, and particularly the dead infant
body, which became the conduit for the expression of this tension between fragmentation
and wholeness. In contemporary Western society, in the normal course of events, the infant
body and the dead body are at opposite ends of the lifecourse. When they meet, they create
a powerfully symbolic body, one that disrupts the order of life. Refracted through this
body, the tension between fragmentation and wholeness becomes particularly acute, as the
practice of pathology, arguably the epitome of the cultural, collides with a body that is
constructed as the essence of the natural (Gottlieb 2000) and the innocent (Higonet 1998).
Following Foucault (1973), Leder (1998: 117) argues that modern medicine is founded
‘upon the dead, or inanimate, body.’ Adopting a Cartesian framework, the body is
separated from self. Yet, increasingly in contemporary society, the body is perceived as self
(Shilling 2003). Haddow’s (2005) study on organ donation highlights the tension between
these two perspectives. Whilst some families of the deceased, particularly those who had a
medical background or familial association with the medical profession, adopted a dualistic
framework and separated body and self, others adhered to a holistic view of the body in
which body and self are closely related (Haddow 2005).
Debates about the relationship between body and self and the necessity of body whole-
ness are long standing. The medieval period in particular bears comparison with contem-
porary concerns, for as Bynum (1992: 295) argues, ‘The later thirteenth century saw a new
enthusiasm for bodily partition – for scientific, political and cultic reasons – coupled with new
efforts to limit, prohibit and deny it’. Despite the Catholic Church taking an ambiguous
approach to dissection (Alston 1944), bodies were frequently dismembered. Among
elites, if bodies were to be transported a long distance, they were often eviscerated and
stuffed with salt and spices; the entrails being buried in consecrated ground at the place of
death and sometimes given their own monument (Horrox 1999). Similarly, the circulation
of saintly relics in which body part stood for whole demonstrates both an acceptance of
bodily dismemberment and a belief that the saint was embodied in the various body parts
and fragments (Bynum 1992). Yet, paradoxically, 12th and 13th century theological debates
about the resurrection centred on the necessity of the body’s material continuity for
personhood, and body dismemberment often gave rise to deep unease (Bynum 1992).
The Renaissance and Enlightenment periods consolidated a growing interest in the practice
of dissection, often carried out, to the distress of relatives, on the bodies of the marginalised
in society (Richardson 1987). Later in the First World War, during which male bodies
were dismembered on a horrific scale, spiritualists sought to bring comfort to the bereaved
through messages from the deceased reassuring them that all the ‘pieces’ had been ‘put
back together’ (Bourke 1999: 234). Shortly afterwards in the 1920s, there was public concern
about the carelessness of some anatomy schools in ensuring that each part of the body was
returned to the correct ‘shell’ (Bourke 1999: 219). For a sustained period then, there has
been a discourse that to a degree posits organs and tissues as self, and concerns about
body wholeness. The furore surrounding the organ retention scandal signals a revitalisation
of these concerns at a time when the body is increasingly fragmented in the pursuit of
knowledge.
Many of the parents involved in the organ retention scandal did not want their child to
undergo a post-mortem at all. They felt that their child had already ‘suffered enough’ or
‘been through enough’ and therefore they did not want them ‘cut up’:

. . . and I just remember hearing them say that they needed a post-mortem. I cannot
recall being asked specifically if I consented to one. Had I been asked about it, and given
the opportunity to consider the matter, I would not have agreed to one; Laurie had been
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1028 Valerie M. Sheach Leith

through all these surgical procedures, and the last thing I wanted was for him to be cut
up any more. However, at the time, it seemed to me that it was something that would just
happen (BRI WIT 0226 0009 (1999)).

A considerable number of parents then already had concerns, if not about the retention of
organs (of which they were unaware), but about their child’s body undergoing a post-mortem
and Weiss et al. (1997) cite concerns about the body being ‘cut up’ or ‘mutilated’ as one of
the major reasons that a post-mortem is refused.
As in the medieval period, some parents felt that organs and tissues (however small)
embodied the personhood of their child. The first quotation relates to the retention of the
heart for teaching purposes, the second to material held by the pathology department:

I also asked Amanda where Karen was being kept, and I was terribly upset to hear
that she was in a Museum as this conjured up all sorts of images of Karen being
stared at. Later Mary reassured me that it was not a Museum in the full sense, that
only certain people could go in and that they had to get permission from the
Cardiologist (PQ CMO Letter 249 (2001)).

On visiting the hospital I was met with my son on the table in front of me.
They placed him in a casket [small child’s coffin] and I took him home to
find a brown box inside with 52 tissue samples and 40–50 slides in the box
(PQ CMO 42 (2001)).

For some parents then, organs and tissues, embodied personhood, or held particular
symbolic significance:

Two years after her death we realised not only had we been told lies about what
was best for our child, but we felt as if they had stolen the most precious part
of our baby, her heart, the symbol of love and she was buried without it
(BRI WIT 0363 0010 (1999)).

From this perspective, it is not surprising that the disposal of organs and tissues as ‘clinical
waste’ was distressing. This method did not meet expectations that retained organs, and
tissues would be disposed of respectfully (CMO Summit Transcript 2001). Some parents,
but by no means all, suggested in their responses to the CMO that, in an echo of the
Medieval period, there should be a ceremonial aspect to the act of disposal of human
material currently held by hospitals, ‘maybe in a special garden in the hospital grounds,
a memorial to all those who died’ (PQ CMO 342 (2001)), ‘carried out with dignity at
crematoriums with memorial services held’ (PQ CMO 34 (2001)). However, a study of
public perceptions of the retention of organs and tissues for medical practice, teaching
and research found that only a minority favoured having some form of ceremony at the
time of disposal (ROC 2002a).
Again reminiscent of medieval beliefs, some contemporary parents also seemed to be
concerned as to the necessity of ‘wholeness’ for the wellbeing of their child in the afterlife:

Being a Catholic I believe all children go to heaven and grow up there, this cannot
be so for my daughter . . . having been robbed of her heart. I now believe she must
be not fully at peace and won’t rest until her heart, organs are interred with
the rest of her body (PQ CMO 199 (2001)).
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 The organ retention scandal 1029

Although I am a Christian and believe in God and heaven I feel that B is not
complete and therefore not in heaven. I feel as my (sic) daughter is not at peace
(PQ CMO 79 (2001)).

Overall, a religious discourse was muted in the documentary evidence from parents, and
very few cited the disregard of religious beliefs about body wholeness as being a particular
source of distress. Note, however, that Alder Hey Hospital, one of the hospitals at the
centre of the organ retention scandal is located in Liverpool – one of the most Catholic
cities in the UK – and whilst the Catholic Church does not prohibit post-mortems, if
parents mentioned religious beliefs it was Catholicism that was most frequently referred to.
In addition, great anguish was caused to the family of Mr Cyril Isaacs, an Orthodox Jew,
whose brain, against the tenets of his faith, was retained in 1987 at Coroners’ post-mortem
and then used in research into mental illness without their knowledge or consent.
Analysis revealed that a significant number of parents were concerned about ‘body
wholeness’.7 Just over a third of parents who submitted written evidence to the CMO’s
Summit (2001), and just over half as described in the Royal Liverpool Children’s Inquiry
Report (2001) express such terms. Three terms, ‘whole’, ‘intact’ and ‘complete’, were
frequently used by parents in their inquiry submissions:

At night, when I sleep (if I can sleep) I have nightmares where I see my daughter in
limbo because she’s not whole, she doesn’t know where to go (PQ CMO 129 (2001),
my italics).

These were our children, the ‘oos’ and ‘aas’ of the Nativity at Christmas. Do they
deserve less dignity, less respect, than the ones we cuddle. Do they deserve to be worse
than raped when they are stripped of all that made them ours. And we as parents robbed
of our right and responsibility to put our loved ones to rest complete and whole as they
were given to us (PQ CMO 285 (2001), my italics).

We have been informed that both our babies’ brains have been disposed of in keeping
with hospital procedure. This has once again denied us the choice of burying our babies
completely. How can we come to terms with this? If we had been informed that their
brains had to be fixed prior to examination, we might have agreed but we would have
delayed their burials until they could be laid to rest intact (IRGROP Parental Submission
B (2001), my italics).

All three terms, ‘whole’, ‘intact’ and ‘complete’, can denote the other. In addition, they can
all be used to describe something that is ‘uninjured or undamaged’, ‘perfect in quality or
kind’, ‘untouched or unimpaired’, ‘left complete or perfect’. The antitheses of these terms
are ‘injured’ or ‘damaged’, ‘imperfect’, ‘touched’ or ‘impaired’, ‘incomplete’. When parents
say they do not want their child ‘touched’, are they also saying they do not want their child
made less than perfect? When they say they feel their child is ‘incomplete’, are they also
saying I feel my child is ‘injured’ or ‘damaged’? Language use is central to many forms of
discourse analysis, perceived as not only reflecting social reality but also constituting it.
The use of these terms in relation to the child’s body both reflects and shapes a concern
about body wholeness, which is qualitatively different from the well-documented anxieties
about mutilation of the body during post-mortem (Sanner 1994) or organ donation
procedures (Weiss et al. 1997). The focus is less on the ‘cutting up’ or ‘cutting into’ the
body and more on the hollowing out of the body. Parents talk of burying a ‘shell’:
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1030 Valerie M. Sheach Leith

I cannot bear the thought of going on with my life knowing all I buried
was a shell. I need my child putting back together again (PQ CMO 280
(2001)).

To think I buried my son whole, then find this out has messed my life up, to go
down to the cemetery and think my son’s body is in pieces in a grave is beyond despair.
I buried a shell to start off with and now I am piecing him back together (PQ CMO
187 (2001)).

Although, as previously noted, parents rarely drew attention to particular religious faiths,
some did express a belief that might have a religious/spiritual aspect; that their child was
not ‘at rest’ because of the retention of their organs and tissues:

He had been through enough when he was alive. I would have liked him to be
in one piece (whole) for burial. And let him be at rest (PQ CMO 331 (2001)).

I am not deeply religious but I do have certain beliefs. I believe that your heart is
your soul. My daughter is not together and she has not been laid to rest (PQ CMO
344 (2001)).

It could be argued that terms such as ‘at rest’ and ‘at peace’ are merely euphemisms. In
some cases, parents may be expressing a wish for their renewed grief to be at an end.
However, I argue that in this context, the use of these phrases goes beyond masking harsher
terms such as burial or death, signifying instead a relationship between the living and the
dead in which the deceased are constructed as being ‘at rest’ or ‘at peace’ and ‘in heaven’.
These cultural concepts, as well as involving a physical act of burial or cremation, have a
religious, psychic and visual quality.
Brazier (2003: 31) comments on the interests that need to be considered in granting
parents control of their child’s body, one of these being that ‘the physical body of a beloved
child remains fixed in the mind. Rationally parents know the child does not suffer or
bleed. In the imagination, nightmares haunt their sleep’. Is it not possible that parents
also construct an image or inner representation of their dead child which can also be
threatened?

When we first discovered we were devastated – for me, thinking that they had cut out her
brain from her tiny head makes me feel physically sick and disgusted. I have flashbacks
to her death – my memory of her looking peaceful and beautiful has been corrupted by
the thoughts of the butchery that took place on that innocent child. I am bitter and
repulsed (PQ CMO 358 (2001)).

Arguably, for some parents, it is necessary for their child to be ‘whole’, ‘intact’ or ‘com-
plete’, for the image of their dead child to be a comforting one. The analysis, however,
revealed that some parents, who were concerned to reunite the organs and tissues with the
body of their child, would have agreed to their retention had they been asked to give
consent at the time. Others would not. This would suggest that ‘body wholeness’ is as much
a mental image that parents hold of their child, as it is a physical one. If parents know that
organs and/or tissues have been retained they can then incorporate this knowledge into the
image they create of their child in death. The concept of body wholeness is thus both a
physical and a metaphysical one. By seeking to recreate wholeness for their child, parents
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are in effect, re(membering) their child’s body, a body through which they expressed their
love, and through which they created memories that have to last a lifetime.
In death, as in life, parents continued to have a relationship with their dead child.
Ultimately, all parents, irrespective of their beliefs about body wholeness, sought to have
more control over what happened to their child’s body. Whilst Kristeva (1982: 4) argues
that, ‘The corpse, seen without God and outside of science, is the utmost of abjection’, it
is perhaps the child/infant corpse outside a parent’s protection that epitomises abjection.
As Campbell and Willis (2005) contend so insightfully:

. . . a richer understanding – one which acknowledges the significance of . . . ‘embodied

selves’ in peoples’ stories of their lives and in the lives of those they love – will serve
medicine much more adequately than over-rationalistic accounts, which see the body as
merely a container for consciousness (2005: 101).

In this section then, I have sought to show that parents did have real concerns about body
wholeness. I would argue that a narrow focus on informed consent alone, whilst meeting
ethical imperatives as they are currently constructed, does not, in itself necessarily involve
a recognition and understanding of valid concerns about body wholeness. A recognition
that embodiment, as Townsend (1998) implies, is more than just skin deep:

We know who we are, who others are, where we begin and end, and where others begin
and end, from the exteriors of bodies. But, unless that body is filled, properly, by organs
and skeleton what are we? Our identity might seemingly derive from the establishment of
the exterior in the vision of others and ourselves, but what constitutes our existence and
permits our subjectivity is on the inside, an unseen mystery (1998: 67, emphasis in the
original).

Beyond consent: the gift relationship and post-mortem citizenship

In this section, I focus on notions of the gift relationship and post-mortem citizenship that,
although less strident than the discourse of consent, were also apparent in the documentary
evidence. Some parents drew attention to the discrepancies between organ retention and
practice governing organ donation for transplant, members of the medico-scientific com-
munity highlighted the need for altruism to advance medical knowledge, and these notions
were clearly articulated in discussions of and recommendations for future policy. I begin
by providing a brief background to the historical practice of gaining consent for hospital
post-mortems. The creation of the NHS fostered a symbiotic relationship of deference
and paternalism between patients and doctors, and before the introduction of the Human
Tissue Act (1961) it is likely that relatives had little say over whether or not a post-mortem
was conducted. Indeed, in some hospitals before 1961 consent to post-mortem was a condition
of admission (Isaacs Report 2003). The Human Tissue Act (1961) was itself recognition of
the pace of new medical technologies, specifically in the area of organ transplantation. The
organ retention scandal, however, showed the Act (or interpretation of the Act) to be
lacking in respect of post-mortem practice. Leaving deficiencies in the wording of the Act
aside (the moot point being whether ‘lack of objection’ correlated directly to the giving of
consent) doctors and other healthcare professionals justified their failure to obtain
informed consent for hospital post-mortems by stating that they wished to spare bereaved
relatives further distress:
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1032 Valerie M. Sheach Leith

Although patients’ families were clearly not told specific details of what the examination
entailed by the doctor requesting consent for the autopsy, this was undoubtedly felt to be
an act of compassion and not one of concealment (BPPA CMO 241 (2001), my italics).

As previously noted, the majority of post-mortems conducted are judicial post-mortems

(Auditor General 2002, Department of Health 2001); this further exacerbated the problem.
Although latterly it was more readily understood that, in this context, organs and tissues
could not be removed at post-mortem for the express purpose of research and therapy, a
particular interpretation of the law, and ‘common practice’ clouded the issue of what could
be done with human material after the legal requirements were met. In response to a
question during the Bristol Royal Infirmary Inquiry relating to the conduct of Coroner’s
post-mortems, paediatric pathologist Professor Berry gave the following response:

Our views are based on common practice, the law and ethics, so much as we considered
them in those days. I think our view was that tissue which was lawfully obtained and was
no longer required for its original purpose could ethically be used for the greater good,
if you like (Bristol Royal Infirmary Transcript 55 (1999)).

Given this at best paternalistic background, in respect of both judicial and hospital
post-mortems, the vociferous concerns of parents, and the momentum of the discourse of
consent in the field of bioethics (Corrigan 2003, O’Neill 2002), unsurprisingly issues of
consent were dominant across the documentary evidence from all parties. Announcing the
publication of the Royal Liverpool Children’s Inquiry Report detailing practices at Alder
Hey Hospital, the then Secretary of State for Health, Alan Milburn, put ‘informed consent’
at the centre of reforms to the Human Tissue Act (1961):

. . . as the events at Alder Hey show, modern patient expectations and traditional clinical
practices have grown apart. The national health service can no longer assume that the
benefits of science, medicine or research are somehow self-evident, regardless of the
wishes of patients or their families. The relationship between patients and the service today
has to be based on informed consent. That will require changes in practice, policy and
medical education. As I have made clear today, it will also require changes in the law
(HC Deb (2000–2001) Vol. 362 Col. 178, my italics).

Since the organ retention scandal, there has been concentrated debate as to the nature of
‘informed consent’ (Brazier 2003, O’Neill 2003); the appropriateness of ‘informed consent’
in the context of post-mortem (Brazier 2003, Downie 2003, Independent Review Group on
the Retention of Organs at Post-mortem (IRGROP) Final Report From Phase One 20018)
and whether an emphasis on consent alone is enough to restore trust between the lay public
and the medical profession (O’Neill 2003). Thus, the concept of ‘informed consent’ is itself
problematic, and critics also point to the weaknesses of an ethical framework which con-
structs people as autonomous individuals divorced from wider social networks (Corrigan
2003, Ells 2003). As Corrigan (2003: 789) states, ‘The dualistic opposition between liberal
concepts of autonomy and freedom versus powerful autocratic medical practices fails to realise
that power is not just a phenomenon that is exercised as an external constraint, but that
prevailing cultural norms, values and systems of expertise shape the field of choice’. Notions of
the gift relationship and post-mortem citizenship highlight the importance of cultural
context and serve to temper the emphasis on individual autonomy inherent in the discourse
of consent. Significantly, they also ease concerns about the commodification of the body.
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 The organ retention scandal 1033

The first of these, the gift relationship sought to shift the emphasis from the giving of
consent to the taking of organs and tissues to one of positive donation as articulated in the
Chief Medical Officer’s underlying principles for reform. It is suggested that such a change
would ‘signal a new relationship with the public and bereaved families’ (Department of
Health, Department of Education and Employment, Home Office 2001: 41):

A gift relationship: the emphasis in all present legislation and guidance is on ‘taking’ and
‘retaining’. The balance should be shifted to ‘donation’, so that tissue or organs are given
as a gift to help others and recognised as deserving of gratitude to those making
donations (Department of Health, Department of Education and Employment,
Home Office 2001: 37).

The then Chief Executive of the Retained Organs Commission, Steve Catling, also used the
language of the gift in the afterword of the 2002 ROC Annual Report:

. . . retained organs and tissue contribute in many different ways to the improvement
of the health of all of us, from helping to ensure the accuracy of results of the
histological examination of samples from living patients to providing the basis
for the beneficial treatment of other family members. Truly, by such gifts (like
donation for transplant) we may live on and contribute after we die
(ROC Annual Report 2002: 25–26, my italics).

Both these quotations draw on rhetoric circulating in the discursive field relating to dona-
tion for transplant. In this respect, Lock (2002: 318) argues that the, ‘Use of the “gift”
metaphor has had the effect of representing the act as a personal choice – one that “fits”
with a dominant ideology in North America [and Western Europe] of having the right to
dispose of one’s property as one wishes’. Similarly, the assimilation of the philosophy of
the gift relationship in respect of post-mortem practice corresponds with predominant
liberal autonomous constructions of consent, which uphold autonomy and choice,
concepts highly prized in Western culture. Paradoxically, however, the gift relationship, as
constructed by Titmuss (1970) in his classic study of the motivations of blood donors also
involves a social bond. Whilst not using the term specifically the following quotation from
a representative of the British Medical Association, resonates with the rhetoric of the gift
relationship:

The third point . . . I think is to recognise that we all have, as members of society and
as patients and as future users of the Health Service, an altruistic streak to help our
own fellow potential patients. We have seen this in a completely unrelated issue of
organ donation and I think that it seems to me clear from what has been said today
that is a common theme here (representative of the BMA9 CMO Summit Transcript
2001: 19).

In this quotation the speaker uses inclusive language, ‘we all have’, and stresses the rela-
tionships we have with one another and the health service, ‘members of society’, ‘patients’,
‘future users of the health service’, ‘fellow potential patients’ suggesting that, ‘we all
have . . . an altruistic streak.’ A direct link is made to the sphere of organ donation.10
Ultimately, I would argue, this statement is a normative one. The overall effect encourages
us to consider whether ‘we [should] all have . . . an altruistic streak [an obligation] to help
our own fellow potential patients’.
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Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd
1034 Valerie M. Sheach Leith

The arguments put forward in the documentary material by the medico-scientific com-
munity as to the benefits of post-mortem practice and the retention of organs and tissues
for subsequent diagnostic, teaching, audit and research purposes, bears great similarity to
those made in respect of the public’s participation in genetic research (Petersen 2005).
Petersen argues that, ‘Words and phrases such as “altruistic”, “gift”, “sharing”, “opport-
unities to help others”, “common interest”, “help those suffering from disease” and so on,
have strong resonance in liberal democracies, especially with a broadening of the concept
of social citizenship and an emphasis on citizen duties’ (2005: 284). As illustrated above,
these terms also peppered the documentary evidence from the medico-scientific community
in relation to post-mortem practice, providing a distinct counter-balance to the emphasis
on autonomy and choice inherent in the discourse of consent.
As well as invoking a social bond, drawing upon Titmuss’s idealistic model of the gift
relationship in the context of organ and tissue donation during post-mortem, also eludes
the economic value that might arise from the giving of such a ‘gift’. Yet, as Waldby (2002:
309) notes, ‘the ideal gift economy set out by Titmuss is becoming more difficult to recon-
cile with the recent, ever-growing capital value of the biological fragment, and the ability
of biotechnology to make cells, tissues, genes and the like ever more productive’. In the
renowned American case of Moore v Regents of the University of California (1990), the
tissue of John Moore, a leukaemia patient, was used to create a patented cell line of
immense commercial value without his consent. The Californian Supreme Court held
that doctors must inform patients that their tissue could be used in research. However,
they denied Moore’s claim that he had a property right in his tissue (Mason and Laurie
2001). Whilst the legal framework surrounding the body as property is a complex one
it is largely accepted in UK law that there is no property in a corpse (Mason and Laurie
2001).
The concept of property in relation to the human body, however, was apparent in a range
of documentary evidence including, but not exclusive to, parental submissions, and
responses to consultation and policy documents, these in themselves considered whether
adopting a property model in respect of the human body would be potentially beneficial.
Some parents expressed a sense of ownership in respect of their child’s body in their
submissions to the Chief Medical Officer:

Do you have any recommendations so that organ retention without consent does not
take place in the future?

There should be a law to stop them doing it without consent. In my eyes it is just
stealing, they do not ask anyone if they can take it, they just do. They stole my child’s
brain. That is the main thing I want to get across. Maria was mine and they stole her brain
from me (PQ CMO 75 (2001), my italics).

The actual effect is similar to that experienced when one has property taken without
knowledge or consent, theft in other words, However we are not dealing merely with
property here we are talking about human beings – loved ones, family, friends and so the
effect is incalculably greater (PQ CMO 24 (2001), emphasis in the original).

Clearly, these references to theft suggest parents felt that in some sense they owned their
child. As Shields et al. (2003: 215) citing Furman comment, ‘Feelings of proprietariness can
be integral to having (1996) and rearing (1992) children. In other words, parents often feel
they own their children’. Although, as illustrated, parents talk of organs being stolen or a
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 The organ retention scandal 1035

theft being committed, which might suggest a discourse of property, the ROC drew a
distinction between ownership and control:

Many relatives have expressed to us their grievance that they did not ‘own’ the bodies of
their dead child, spouse or other relative. Their distress is not at lack of ownership in
the sense of regarding the remains of their relative a ‘something’ to be bought or sold.
That notion is deeply repugnant to them. The essential issue is that of control – which
does not of itself require ownership (ROC (207) Response to HBHC Consultation (2002),
emphasis in the original).

Similarly, in her discussion of the BRI inquiry, Maclean (2002: 81) comments that, ‘We
heard not about parental rights to the body of their child as property . . . but about the
central concept on which the Children Act 1989 is founded, that of parental responsibility
which not only transcends the legal relationship of the parents but also continues after
death’. This feeling of responsibility is reflected in this statement from a participant at the
CMO Summit:

When a child dies that child is still the parents’ child – not a specimen, not a case, not an
unfortunate casualty of a failed procedure, but someone’s baby, someone’s child. In life
the parent is responsible for every aspect of the child’s well-being. In death that
responsibility should not be taken away (CMO Summit Transcript 2001: 6).

In the consultation and policy documentation, discussion of the concept of property

related largely to the usefulness of adopting a property model in protecting the rights of
relatives to control what happens to the body of the deceased – although increasing em-
phasis is to be placed on giving primacy to the wishes of the deceased themselves – and the
rights of the medico-scientific community to carry out their work unhindered. Much of this
discourse then has a pragmatic rather than moral tenor. However, in the Human Bodies,
Human Choices (2002: 46) consultation document, in a discussion of the complexities of
invoking a property model in respect of the body, it is stated that, ‘Such [property] rights
might, in any case, sit uneasily with the dignity that should be accorded to a dead body’.
Mitchell (2004: 123) argues that those who seek to, ‘oppose the transformation of body
part transfer into commodity exchange’ invoke the ‘discourse of “dignity”’. Although in
this extract from the IRGROP Final Report From Phase One (2001), the term ‘dignity’ is
not used specifically, an unwillingness to use the language of property in respect of the
human body is apparent:

. . . It is in our view uncontentious that parents should play a continuing and informed
role in what happens to their children after death, should they so wish. In saying this, we
do not propose that a right of ownership is created, as we are reluctant to use such
language in respect of a person rather than a thing. However, it is consistent with the
rights that parents have in treatment decisions that they should also be actively involved
in decisions taken subsequent to their child’s death . . . This is a matter of respect rather
than ownership (IRGROP Final Report From Phase One January 2001: 17–18, emphasis
in the original).

There is then, in the greater part of this evidence, a rejection of applying a property model
to the body. That this is the case may relate as much to the legal complexities (as in the
case of Moore v Regents of the University of California (1990)), of applying a property
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1036 Valerie M. Sheach Leith

model to the body, and the resultant difficulties that might arise for research bodies from
such an approach, as to a moral abhorrence of placing the body into a property frame-
work. Whilst Mason and Laurie (2001) make a strong case for adopting a partial property
model alongside that of consent, noting that the two are not mutually exclusive, such a
model has been rejected by legislators. Yet, paradoxically, as Mason and Laurie (2001: 726)
note, ‘the language of “gift” implies property and ownership – for “gifting” is simply one
of a number of means of transferring “property”. . . .’
What is stressed is that most parents would have been happy or willing to have ‘donated’
their child’s organs had they been asked and that by not being, they were denied the
opportunity to be altruistic. For example, in the ROC Final Report (2004: 9) it is stated
that the majority of relatives they met would have willingly ‘donated’ organs, with only a
minority saying that under no circumstances would they have agreed, if their relatives’
organs could have been put to ‘good use’. This assertion also has a normative effect,
promoting the belief that to donate organs and tissues is acceptable to most of the public.
However, detailed analysis of parental documentary evidence revealed a more complex
picture. Some parents offered their child’s organs for transplantation prior to or upon their
death and many do say that they would have willingly given organs and tissues if their
consent had been sought:

When I laid Stacy to rest, I never imagined that I would be doing it again five years down
the line. To be really honest with you, if I was asked at the time for Stacy’s brain to be
kept, I would have said YES and that would have been all dealt with as the grieving
process at that time. Perhaps it may have even helped knowing that Stacy could have
helped another child by gaining a better understanding of her condition. THEY ONLY
HAD TO ASK (IRGROP Parental Submission L (2001)).

Others are adamant that had they known that organs and tissues were to be retained, they
would have refused consent for a post-mortem or not allowed retention, and some would
have agreed to the retention of particular organs but not others.

We both feel that we were pressurised into giving permission. We were

repeatedly told it might help someone else to avoid going through what we were
going through. We feel completely let down and misled by the Hospital. If we had
been told that they intended keeping the babies’ brains for examination, there is no
way we would or could have allowed a post-mortem to be done (IRGROP Parental
Submission B (2001)).

Had I been asked at the time, I may have consented to Michael’s heart being retained, if
it would enable them to help other children with the same condition. I cannot be sure
what my answer would have been, because I am so angry that they went ahead and took
organs without even asking that I cannot reach any calm conclusions about it. There is
no way that I would have consented to the retention of any other organs, and
particularly the brain (PQ CMO 354 (2001)).

Arguably, the decisions that parents would have made at the time cannot be known. Whilst
public support for organ donation for transplantation is high, this does not necessarily
result in actual donations taking place (Moloney and Walker 2002). Additionally, what
relatives understand by ‘good use’ is open to interpretation; it may not necessarily include
all medical research, teaching or audit purposes (ROC 2003).
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 The organ retention scandal 1037

It should also be noted that in the large majority of deaths the question as to whether
organs or tissues can be retained does not arise. The rate of coroners’ post-mortems has
remained fairly stable (The Shipman Inquiry 2003: 221) for a variety of reasons (Cox and
Scott 2001, Khong 2002, Underwood 2001), which are more related to resource issues and
a decline in clinicians’ belief in the need for post-mortems than to a public abhorrence of
post-mortems. This means that the number of hospital post-mortems has been in continual
decline for several decades. In Scotland, the number fell from 6,600 in 1980 to 2,200 in 2000
(Auditor General 2002: 4). Similar downward trends are reported for England and Wales.
Underwood (2001: 7) comments that, ‘clinical autopsies – and the pathologists sufficiently
experienced to perform them – face extinction’.
Paradoxically then, the organ retention scandal has provided an opportunity for the
benefits of post-mortem examination, to individual families and the nation’s health as a
whole, to be emphasised. In the documentary evidence from a range of parties, including
professional medical bodies but also from parents and parent groups, it is often stated that
the public should be educated about post-mortem practice although their reasons for doing
so may differ. Whilst parents called for more information as to what a post-mortem
entailed so that they could make an informed choice, there was also the implication in the
documentary evidence, that greater knowledge of the potential benefits would increase
support for the procedure and for the retention of organs and tissues. This was particularly
the case in evidence from professional medical bodies and members of the medico-scientific
community that had a commitment to furthering medical research. In comparison to organ
donation for transplant, however, its benefits may be more difficult to promote. Organ
donation for transplantation is widely known, supported in spirit at least by the public and
is constructed as holding out the promise of life for others in a direct and tangible manner.
Conversely, for individual families the benefits of post-mortem examination are more neb-
ulous, and research outcomes long term are cumulative rather than immediate. As such,
the revitalisation of post-mortem practice may well require us to think more radically
about the responsibilities we have to words the long-term development of healthcare: to
subscribe in effect to a post-mortem citizenship. This would involve putting the advantages
derived from post-mortem practice and the retention of organs and tissues to the public’s
health before our own, or our relatives’, needs for body wholeness.
In the documentary evidence, particularly that generated in response to public con-
sultations, there was considerable discussion as to the appropriate balance between the
rights of the deceased individual and their relatives against those who might benefit
from organ and tissue retention and the potential advancement of medical science.
At the CMO Summit for example, Professor Grubb, Professor of Medical Law at the
University of Cardiff, commenting on the legal ambiguities in the Human Tissue Act
(1961) said:

Any solution must, I would suggest, both respect the integrity of dead bodies and the
wishes and interests of the surviving relatives and also not unnecessarily or unduly
prejudice scientific research teaching or education from which great benefit can be gained
by society. It is, therefore, a matter of balance between those two perhaps sometimes
competing interests (CMO Summit Transcript 2001: 30).

The consultation document Human Bodies, Human Choices (2002) also stated the need
for an ‘acceptable balance’ to be found. The document itself, however, was criticised by
some respondents for privileging the rights of the individual over the needs of society as a
whole:
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1038 Valerie M. Sheach Leith

The HBHC document focuses almost entirely upon the concerns of the individual
(patient and relatives), with little consideration of the public health benefits of making
the proper study and use of organs and tissues not overly inhibited by bureaucracy and
ethical issues (HBHC 2002 (89)).

A consideration of the Human Tissue Act (2004) facilitates exploration of where ultimately
the appropriate balance was felt to lie. Encompassing wide-ranging reforms, the Human
Tissue Act was ratified in November 2004, and is expected to come into full effect in April
2006.11 Informed consent was posited as forming the core of the Act, and there are criminal
sanctions including imprisonment, for those who conduct scheduled activities without
gaining appropriate consent or use material inappropriately. In this sense the balance
clearly lies with the rights of the individual. However, during the Bill’s passage through
parliament there were attempts to introduce a system of ‘presumed consent’ in relation to
organ transplantation. Not surprisingly, in the current climate, this move was rejected. To
require consent for the retention of organs and tissues after post-mortem and no consent
for organ donation would, as noted in parliamentary debate, have been an untenable anomaly
(HC Deb (2003–2004) Vol. 423 Col. 84).
However, in response to concentrated lobbying by the medico-scientific community that
the Bill was too restrictive and would hinder the advancement of medical science, a signifi-
cant amendment was made. These concerns centred on the use of tissue from the living.
When the Bill was first presented to parliament, consent was required for all uses of tissue
removed. In its final form, unless individuals specify that they do not wish their living tissue
to be used for education and teaching purposes ‘relating to human health’ then it can be
assumed that consent has been given. The Act also allows certain types of research to be
carried out provided the material is anonymised. Here the balance tips in favour of the
medico-scientific community. Significantly, giving the dead an ontologically different status
from the living, the use of organs and tissues from the dead body for teaching, audit and
research purposes will always require consent. Much of the detail of the Human Tissue Act
(2004), for instance the guidelines on what constitutes informed consent, the respectful
disposal of tissue, and so on, are to be left to the Human Tissue Authority, established by
the Act. Therefore, how the Act will work in practice remains unknown at present. It is
likely however, that despite the introduction of the Act, broader discourses relating to the
commodification of the body, body ownership and the appropriate balance between
the rights of the individual and the needs of medical science will continue to circulate in
the discursive field. The Human Tissue Act (2004) is not the final arbiter of what it is
culturally appropriate, but merely constructs and reflects these discourses.

Conclusion

In this article, I have sought to go beyond a concentrated focus on consent by highlighting

real concerns about body wholeness and the presence of notions of the gift relationship
and post-mortem citizenship. I have argued that whilst a focus on consent is not necessarily
antithetical to a recognition by the medico-scientific community of the significance of body
wholeness for some individuals, parents and relatives, it does not in itself guarantee it.
Similarly, whilst the notions of the gift relationship and post-mortem citizenship can readily
be incorporated into the discourse of consent, in that there remains a choice whether or
not to give that gift or give of our bodies upon our death, the presence of these notions
nonetheless tempers the emphasis on autonomy inherent in consent. The focus on consent
© 2007 The Author
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 The organ retention scandal 1039

also serves to render the more problematic discourses of property and commodity less
acute. Only in time will it become apparent whether the practical implementation of the
Human Tissue Act (2004) will promote, ‘wholeness . . . integration . . . healing’ (Burkitt
1999: 145) between the medico-scientific community and the lay public. What is crucial is
a recognition that for some individuals, parents and other relatives the, ‘dialectic between
that which is possible and that which appalls’ (Cooter 2003: 484) will remain too deep to
contemplate. The choice to refuse consent must be as culturally acceptable as the choice to
consent.

Address for correspondence: Valerie M. Sheach Leith, The Robert Gordon University, School
of Applied Social Studies, Faculty of Health and Social Care, Garthdee Road, Aberdeen
AB10 7QG
e-mail: v.m.sheach-leith@rgu.ac.uk

Notes

1 Although largely analogous, post-mortem practice in Scotland is covered by Scottish Law.

2 For a full and detailed account of the two types of post-mortem and the regulations governing
each, see the Bristol Royal Infirmary Interim Report (2000).
3 The most recent amendment to the Coroners Rules (1984) is the Coroners (Amendment) Rules
2005.
4 The Human Tissue Act (2004) does not apply in Scotland.
5 These were, The Royal Liverpool Children’s Inquiry (1999); The Independent Review Group on
Retention of Organs at Post-Mortem (Scotland) (2000); The Human Organs Inquiry (HOI)
(Northern Ireland) (2001) and The Isaacs Inquiry (2001).
6 The Retained Organs Commission ceased operation in March 2004.
7 In the analysis, the parental documentary evidence was recorded as expressing a concern about
body wholeness when there was direct reference to the terms whole, complete or intact or there
was evidence to suggest that there was a concern about body wholeness.
8 The Independent Review Group on Retention of Organs at Post–Mortem (Scotland) favoured
the concept of ‘authorisation’ over that of consent. This concept will be introduced in the
Human Tissue (Scotland) Act.
9 Note that the British Medical Association supports presumed consent in relation to organ
donation.
10 The use of the term ‘completely unrelated’ may speak to fears that the confusion between organ
donation and organ/tissue retention may have a detrimental effect on the former.
11 At the time of writing legislative change in Scotland, in the form of the Human Tissue
(Scotland) Act, is still pending.

Acknowledgements

I am grateful to Alex Howson, Phil Sutton, Stephen Vertigans and the two anonymous referees for
their constructive and helpful feedback on an earlier draft of this paper.

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