British Medical Bulletin Advance Access originally published online on February 26, 2008
British Medical Bulletin 2008 85(1):7-16; doi:10.1093/bmb/ldn006
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Research on the recently dead: an historical and ethical examination
1 Institute of Philosophy, Diversity and Mental Health, Centre for Ethnicity and Health, Harrington Building, University of Central Lancashire, Preston PR1 2HE, UK
2 ESRC Centre: CESAGen, Institute for Advanced Studies, Lancaster University, Lancaster LA1 4YD, UK
Correspondence to: Dr F. Tomasini Institute of Philosophy Diversity and Mental Health Centre for Ethnicity and Health, Harrington Building, University of Central Lancashire Solider Preston PR1 2HE UK E-mail: FJTomasini{at}uclan.ac.uk/ f.tomasini{at}lancaster.ac.uk
 |
Abstract |
|---|
 Top Abstract Research on the recently...Research on the recently...References |
|---|
Introduction and sources of data: This paper briefly outlines the history of research on the recently dead, before critically exploring
1. In what sense can we harm the dead?
2. What are the justificatory arguments for employing family or parental consent for medical research on dead relatives?
Areas of agreement, controversy, growing points of interest and areas timely for developing research: The controversy surrounding harm in relation to research on dead bodies largely depends on how dead people are perceived. That is,
1. As Cadavers
2. As Ante-mortem persons
3. By Significant others
Controversy over whether we need to have consent from significant others (bereaved relatives) depends on the weight we give to the bereaved and their experience of the dead. Understanding this is timely in developing research and is relevant to the issue of consent around organ donation for transplants.
Keywords: body snatching • Alder Hey and Bristol Public Inquiries • post-mortem harm • ante-mortem harm • parental and informed consent
|
Research on the recently dead: an historical overview |
|---|
|
TopAbstractResearch on the recently...Research on the recently...References |
|---|
The history of research on the dead is an ignominious one, linking a long legacy of body snatching—the historical practice of digging up freshly interned corpses from their graves—to advances in anatomy (Much of the historical information for this section before 1948 comes from Richardson1 and her article on human dissection and organ donation).
To understand the long legacy of body snatching, we need to look at the history of anatomy, where anatomy by dissection has historically been a key component in medical education and training. Before body snatching became widespread in the Georgian Era (1714–1830), there were more regulated ways of procuring fresh corpses for dissection and anatomical education. As early as the sixteenth century, in the reign of Henry VIII, dissection was made a judicial punishment reserved for the worst murderers. By the mid-eighteenth century, dissection was made a legitimate part of the death sentence for all cases of murder. While, on the one hand, dissection became part of the legitimate fabric of retributive justice, it also became, on the other hand, a gross assault on the integrity and identity of the body. The Act of Parliament which granted to doctors the bodies of all murderers2 did not alleviate the growing problem of supply and demand; there were not nearly enough fresh corpses to meet medical demand by this Act, fuelling the practice of body snatching in Georgian era.
Body snatching tormented the thoughts of the dying, mangled the grieving process, and denied the traditional comfort that their loved ones would rest in peace. Opposition to body snatching amongst the public in the Georgian era was widespread: the wealthy obtaining multiple coffins and secure burial vaults, whole parishes getting together to pay for churchyard lighting and watchmen (in poor districts, clubs were formed to share the duty of watching over the graveyard). On occasion, full scale riots erupted, resulting in attacks on doctors' houses and even the demolition of an anatomy school. Despite public vehemence against the practice of body snatching, there were medical pioneers like George Hunter, the famous eighteenth century surgeon-anatomist (often called the ‘Father of Scientific Surgery’), who employed agents illegally to obtain stolen human bodies and body parts.1
Ironically, the individuals who made body snatching truly infamous today, Burke and Hare, never robbed a grave of a human body. They obtained corpses by offering hospitality to people down on their luck, plying them with drink and smothering them as they slept. Their bodies were then sold to the anatomy school in Edinburgh run by Dr Robert Knox, who approved of their freshness and asked no questions as to how they were obtained.3 By the time Burke and Hare were actually caught on the day after their last murder, on Halloween 1828, body snatching was in the sights of a House of Parliament Select committee. Not interested in the idea of promoting the idea of consented donation, the select committee eventually hit upon the idea of undermining the lucrative market economy for body snatching by securing a plentiful supply of fresh bodies that satisfied demand. The resulting Anatomy Act of 1832 discontinued the practice of using executed criminals for dissection, authorising in its stead, the dissection of deceased persons whose family members could not afford to pay for a funeral.
A significant change in the treatment of the recently dead occurred when the National Health Service was born in 1948, marking a significant change of attitude in care for the sick and poor. For the first time in UK history, there evolved equilibrium between the number of bodies freely available and the number required for teaching and research. Bodies for donation, teaching and research were provided in a spirit of trust and generosity, by voluntary public donation, motivated by altruism.4
From 1961 and the establishment of Human Tissue Act (HTA), organs, tissues, and body parts—obtained from post-mortem examinations—required a consent procedure; the HTA obligates clinicians to enquire whether any surviving relatives of a deceased person might object to the body being used for therapeutic purposes, medical education, or research. In 1999 and 2000, it became clear that HTA had been contravened, most visibly at Alder Hey Children's Hospital and The Bristol Royal Infirmary, both of which prompted public scandals for improper practices in the obtainment and retention of organs, tissues, and body parts culminating in Public Inquiry Reports (published in 2001).
While the furore about improperly obtaining, retaining, and disposing of organs, body parts, and tissues was concentrated on Alder Hey and Bristol, it was a surprisingly widespread phenomenon. A census conducted by the chief medical officer Liam Donaldson in 2001 had shown that the practice had been going on for over 30 years, often in the absence of informed consent from parents, and in many cases directly contravening the HTA of 1961. Pathology services, it was found by the census, held over 100 000 human tissue samples, of which 54 300 were retained from over 3 million post-mortems conducted between 1970 and 1999. The census also showed that although most trusts tried to obtain a signed agreement from relatives for post-mortems and organ retention, it often fell far short of gaining what can be termed ‘fully informed consent’.5
Having provided a short historical overview of research in relation to the recently dead, I provide a longer ethical perspective, first examining the issue of harm in relation to the newly dead and finally discussing arguments against and for the requirement of parental consent on the dead bodies of loved ones for medical purposes.
|
Research on the recently dead: an ethical view |
|---|
|
TopAbstractResearch on the recently...Research on the recently...References |
|---|
Can we harm the recently dead? The answer to this question largely depends on what, in precise terms, we mean by death and harm.
One way of approaching such a question is to ask a slightly different question first: ‘Is death a form of harm?’ Or, more specifically ‘Is my death a form of harm to me?’ The Greek philosopher Epicurus reminds us that
For all good and evil consist in sensation, but death is the deprivation of sensation ...So death, the most terrifying of ills, is nothing to us, since so long as we exist, death is not with us: but when death comes, then we do not exist. It does not then concern either the living or the dead, since for the former it is not, and the latter are no more.6The more fundamental argument in Epicurus concerns the existence of a subject: all harm and/or benefit, in the Epicurus' argument, requires an existent subject. So, discounting all speculative supernatural explanations on the continuing existence of the soul after death, there is no person that suffers the evil of death for Epicurus because, the living are not yet dead, and therefore still exist, and the dead cannot suffer because they no longer exist. So, death can never be bad for anyone. The force of the Epicurean argument lies in what Fred Feldman has called the ‘Existence Condition’ that nothing either good nor bad can happen to a subject s at time t unless s exists at t.7 This is a strong argument that resonates closely to the dictum of the Hippocratic Oath: first do no harm—harm being predicated on an existing subject of a life.
One way of thinking about harming the dead is if one appeals to the posthumous interests that survive death (posthumous interests are interests that may continue to exceed the point of ones death e.g. the reputation of ones good name); a view Feinberg first held, but later rejected largely due to a criticism by Partridge (1981) who argues, quite rightly, that there is no person to affect, and events that occur after a person's death appear to occur too late to either harm or benefit the person. As Partridge puts it:
After death, no events can alter a moment of a person's life. Nothing remains to be affected... [W]e cannot alter the completed lives of the dead.8While Partridge is right to say that one cannot alter a dead person's life experience, his argument rests on a common sense view that one cannot harm a person post-mortem because a person's well-being cannot be affected by actions or events that occur after their death. However, this argument assumes a view of well-being and personhood of a particular kind. That is, it rests on a mental states conception of well-being and since dead ‘persons’ have no mental states they cannot be harmed. However, there is an alternative conception of personhood and well-being, where harm in relation to the dead maybe an issue.
According to the philosopher George Pitcher (and the later Feinberg), there is a significant difference between describing a dead friend as she was at some stage of her life—what Pitcher refers to as the ante-mortem person—and describing that same friend as she is now in death, a post-mortem corpse—mouldering, perhaps, in a grave. It is Pitcher's contention that although both ante-mortem and post-mortem persons can be described after their death, only ante-mortem persons can be wronged and/or harmed.9
This can be illustrated using many hypothetical examples that may well resemble real life. For instance, the recently deceased Professor Xavier was to be awarded a Nobel Prize posthumously for groundbreaking research into the causes of cancer. However, a jealous colleague manages to persuade the judges of the awarding committee that he first made the discovery and Xavier plagiarised his work. Now, say the committee reverse their decision in light of this complaint and award the prestigious prize to Xavier's living colleague, and that this had come to light, we would naturally feel a sense of injustice. This sense of injustice is directed at the ante-mortem Xavier. One way, therefore, of thinking about how the dead can be harmed is on the basis of Pitcher and (later) Feinberg's arguments that appeal to the notion of ante-mortem harm.
The reason it is possible to harm the ante-mortem person is because such a conception of personhood invokes a different sense of well-being altogether, i.e. one that does not restrict well-being to either having or not having mental states at any one particular point in time. It is because one can understand wellbeing as anticipated desires and or preferences that one can understand that the ante-mortem Xavier has been harmed posthumously by events after his death.
While this is an ingenious argument, in my view (not all philosophers agree—see Callaghan10), it still restricts how we might be able to construe harm in relation to corpses that are conscripted in (arguably) ethically questionable post-mortem research. For example, in the case of Alder Hey the locus of harm, we naturally think, is the post-mortem body and not the ante-mortem person. In such a case, it would be ludicrous to posit that it is only ante-mortem harm that matters, when the parental oral evidence to the Alder Hey Public Inquiry suggests that harm is entangled with how the post mortem body is treated. For example, from the parental evidence taken at the Alder Hey Children's Inquiry—from the mother of Alexandra (a stillborn child):
...because she knew to people not involved it must seem incomprehensible why anybody would get upset about a dead person's organs because at the end of the day they are dead.11To broaden our understanding of the scope of what harming the dead may mean, it is incumbent upon those from a more philosophical standpoint, to examine whether parental experiences can be made intelligible, and perhaps shed some new light on what harm, in relation to the newly dead, may mean.
There are two distinct ways in which the harm perspective can be broadened in scope, advancing thought beyond the more conventional position hitherto set out. The first perspective involves reframing death as kind of change—broadening our conception of harm to parent's perceptions and experiences of ‘their’ dead. The second perspective involves a deeper understanding of the grieving process, where from a phenomenological point of view death is not identical to non-existence.
The first perspective means re-framing how death is conceived. That is, death is most commonly perceived as a real or Oxford change; an irreversible change in the intrinsic property of the body-subject from a vital living person infused with consciousness to a decaying corpse devoid of all conscious vitality. There are other changes that matter, however, as a consequence of real changes, which have an actual impact on survivors and their perceptions. These changes have been called Cambridge changes (as opposed to Oxford or real changes) and can be illustrated by the changes that living relatives undergo as a consequence of experiencing death of a loved one. Cambridge changes are not like Oxford or real changes in the intrinsic property of things, they do, however, happen as a relational consequence of a real change.12 For example, if Harold and Maud are married and Harold dies, Harold undergoes a real change—he ceases to be a living man—while Maud undergoes a Cambridge change from being a wife to becoming a widow. While this relational or Cambridge change is purely a formal change in the status of a relationship to the deceased, it does not preclude further Cambridge changes. That is, Maud is not only a widow but also likely to be a grieving widow with certain beliefs and expectations about how her beloved, Harold, should be treated now that he is dead.
If we can conceive of death as not only involving a real change, but also a relational Cambridge change, then we can broaden the scope of what harm to the dead may mean and to whom. The shift from Oxford to Cambridge Changes marks a significant shift in how harm is perceived. That is, instead of seeing it as an intrinsic harm to the dead ‘person’ (an ‘Oxford’ change), relational or ‘Cambridge’ changes give rise to harms done to the surviving relatives and their beliefs and experiences about how their loved ones should be treated. It is because Cambridge changes are not just formal changes that they matter. For example, parents of deceased children not only become former parents of dead children, but also become grieving ex-parents. In other words, the question at Alder Hey was not so much ‘can we harm the dead’ but ‘can survivors be harmed by how bodies of their loved ones are treated?’ Furthermore, can this be made intelligible from within a grieving perspective? In answer to the first question, it seems quite clear that the survivor's were harmed. In the case of belief, for example, Alder Hey survivors went through multiple funerals; re-uniting body parts of loved ones in accordance to respect for the dead and belief in religious custom. However, the harm done to parental survivors of dead children is not just reducible to mere adherence to social custom and belief; it also involves a phenomenological sensitivity to the experience of the grieving process and how it can be significantly ‘complicated’ if the recently dead are not treated with care and respect.
The second perspective involves thinking more deeply about the harm perspective from within grieving process, thus making more sense of some of the parental expressions about how they experienced harm done to ‘their’ dead. One way of re-thinking this is by re-examining how parents still intimately identify with their dead in the grieving process, so much so that personal identity of deceased loved ones is still at issue from within the perspective of grief. This can be explained by way of Ricoeur's understanding of personal identity.13
Ricoeur understands personal identity to have a symbolic character; that is, a person is not just a physical unity, but also symbolic unity, presented towards other(s). Ricoeur distinguishes between personal identity as idem and ipse, where ipse identity is created through interpersonal relations, shared practices, and narratives. This kind of identity is not spiritual, it is embodied.14 From this perspective embodied harm post-mortem is intelligible, since parts of the body like the heart, eyes, face, and hands, for example, represent relationships with others that are symbolically inscribed, i.e. they are implied within body parts. So, if body parts are missing, such as the heart, then harm has been done, because body parts represent the memory of personal relationship to body parts strongly identified with when the person was still alive. In this sense personal identity is at stake.15
Having looked at harm in relation to the recently dead, the review ends with the issue of informed consent and research involving the newly dead.
Events at Alder Hey and Bristol reanimated the informed consent debate in a practical way, shifting how the ritual of informed consent was to take place.
The binding force of consent always rests on the satisfaction of conditions of knowledge, intention, competence, voluntariness, and acceptability of content.16 Ideally, there is binding moral and legal mutuality to informed consent, respecting the person's decision to an action for which consent is needed, as well as protecting the person who is seeking to secure consent to carry out that action.
Events at Alder Hey illustrated the problem of opacity of consent, i.e. some parents felt deceived about the information they were given in the consent procedure. This revolved around an ambiguity of meaning between organ and tissue. While some parents consented to the removal of tissue, they did not consent to the removal of whole organs.
While events at Alder Hey and Bristol tightened up the practice of taking fully informed consent post-mortem, the ethical reasons that support its practice remain controversial.
Wilkinson, for example, argues that the commonly held view that parental consent be sought for using children's corpses for medical purposes is overrated.17 He rejects arguments for consent from dead children's interests, property rights, family autonomy, and religious freedom. The only direct reason to get parental consent, in his view, is to avoid distressing parents. (This has implications, according to Wilkinson17, for the consent process and how parental feelings ought to be weighted).
In the case of posthumous interests, Wilkinson is right to point out that younger children have no conception of death that would be sufficiently well worked out to have an interest in what happens to their bodies after death. For Wilkinson posthumous, interests simply do not apply. Wilkinson also rejects grounding consent on the basis of family autonomy, where the intimate relationship between parents and children involving a sharing of selves may shore up a psychological understanding of why family autonomy might matter. For Wilkinson, this cannot apply since there can be no intimacy between the living and the dead (because the dead have no selves to share). This is wrong, in my view, because grief (especially the early stages of grief) still involves intimacy and a sharing of selves. This is because, for phenomenological reasons, death does not mark a simple boundary, between attachment and non-attachment—where a non-attached view allows one to fully separate the body from the person. Arguments for grounding consent on family autonomy, either on the basis of family intimacy and shared selves or on the value of parenthood, cannot be easily dismissed, if one is more sensitive to the internal experience of grieving and not just the outward behaviour of distress.
If posthumous interests and family autonomy do not apply as reasons for grounding consent, then religious and cultural beliefs are simply incomplete for Wilkinson. He remains agnostic about the sufficiency of why religious belief should ground consent, arguing that ‘there is no reason to take into account only parents’ religious beliefs as opposed to anyone's or no one's' (p. 348).17 The one positive reason Wilkinson gives for getting parental permission is to avoid distress. He, quite rightly, distinguishes parental informed consent from parental permission (of which he is in favour), arguing that informed consent is about protecting autonomy and well-being and nothing to do with minimising distress.
Another argument relating informed consent and the newly dead has been offered by Wicclair18, who argues that informed consent does play a significant role in securing the use of the dead for medical purposes. Wicclair provides a different case from Wilkinson's, partly because he does not restrict the discussion of consent to the use of children's dead bodies (is a case for special pleading) and partly because he considers a different set of arguments altogether. Wicclair's arguments, for me, at least, are wholly persuasive.
Wicclair gives reasons for facilitating advance decision-making in relation to post-mortem research. One reason he provides for why we should have control over our bodies is that we have a special relationship with them. In short, events and actions that affect my body also in some sense affect me. The point made is that while we undeniably cease to be persons when we die, our body continues to exist on after our death and because we can anticipate how our body should be treated after our death, we have, in a sense, a distinctive and enduring relationship with it. This, Wicclair suggests, may provide a sufficient reason to extend a right to control what happens to ones body in advance of our death.
Wicclair provides additional reasons to facilitate advance decision-making in anticipating the use of bodies for post-mortem research. First, it provides individuals the opportunity to act altruistically. Secondly, advance decision-making frees family members from the burden of additional stress of deciding at a time when they are grieving the loss of a loved one.
For Wicclair, advance decision-making does not preclude the need to seek consent from family members when they have not made a pre-mortem decision. There are three important respects in which family consent can serve to protect the dead. First, consent can be used to protect the deceased's body from being used for research that is incompatible with the person's pre-mortem preferences and values. Secondly, consent can be used to protect the deceased's body from being subject to disrespectful treatment. In spite of the fact that it is difficult to say exactly what respectful treatment is constitutive of regarding the dead (what respectful treatment of the dead is not only dependent on cultural beliefs, it also varies from within the belief system of individuals), there does seem to be some universal desire for respect—perhaps, by virtue of the fact that individuation remains a significant feature of the newly dead leaving traces of the former individual's history behind. Thirdly, consent can be used to protect and respect the deceased family.
Accepted for publication January 21, 2008.
|
References |
|---|
|
TopAbstractResearch on the recently...Research on the recently...References |
|---|
- Richardson R. Human dissection and organ donation: a historical and social background. Mortality (2006) 11:152–153. 156–159.
- Geo. 11c.37. An Act for Preventing the Horrid Crime of Murder. London: HM Government, 1752.
- Richardson R. Death, Dissection and the Destitute (2000) 2nd ed. Chicago: Chicago University.
- Richardson R, Hurwitz BS. Donors' attitudes towards body donation for dissection. Lancet (1995) 295:195–198.
- Department of Health. Report of a Census of Organs and Tissues Retained by Pathology Services in England (2001) London, UK: The Stationary Office. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_4006720.
- Bailey C, ed. Epicurus. In: The Extant Fragments (1926) Oxford: Clarendon.
- Feldman F. Some puzzles about the evil of death. Phil Rev (1991) 100:205–227.[CrossRef]
- Partridge E. Posthumous interests and posthumous respect. Ethics (1981) 91:248–249.
- Pitcher G. The misfortunes of the dead. Amer Phil Quart (1985) 21:184.
- Callaghan J. On harming the dead. Ethics (1987) 97:341–352.[CrossRef][Web of Science]
- Redfern M. The Royal Liverpool Children's Inquiry Report (The Redfern Report). (2001) London: The Stationary Office, 2001. See Parental Oral evidence.
- Scarre G. Death. (2007) Chesham: Acumen. 105–110.
- Tomasini F. Can we harm the dead? Understanding embodied harm after Alder Hey. In: Back to the Future of the Body—Janes D, et al, eds. (2007) Cambridge: Cambridge Scholars Press.
- Ricoeur P, Blamey K. Oneself as Another (1992) Chicago/London: University of Chicago.
- Dickenson D, Widdershoven G. Ethical issues in limb transplants. Bioethics (2001) 15:110–124.[CrossRef][Web of Science][Medline]
- Simmons A. Consent. In: Concise Routledge Encyclopaedia of Philosophy (2000) Routldege.
- Wilkinson T. Parental consent and the use of dead children's bodies. Kennedy Inst Ethics J (2001) 11:337–358.[CrossRef][Medline]
- Wicclair M. Informed consent and research involving the newly dead. Kennedy Inst Ethics J (2002) 12:351–362.[CrossRef][Medline]
CiteULike 
Connotea 
Del.icio.us What's this?
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||