Organ Donation and Transplantation
Chapter 10
Organ Donation and Transplantation
Introduction
In healthcare jurisdictions where organ transplantation has become a routine form of medical treatment, some of the relevant debates have ranged from appropriate structures and frameworks for increasing the supply of needed organs to legal liability issues arising from the destruction or negligent misdirection of donated organs.1 In Nigeria and other Sub-Saharan African countries, however, organ transplantation is far from being a routine form of medical treatment.2 While a few private and teaching hospitals in Nigeria have varying degrees of capacity to perform organ transplantation, the treatments are expensive and most Nigerian patients in need of organ transplant seek treatment abroad. Moreover, organ donation networks and infrastructures are not yet well-developed in Nigeria. Arguably, the insufficient organ transplant activity in Nigeria has resulted in a very low demand for organs. This means that the debate on organ donation will take a uniquely different dimension in Nigeria; that is, a dimension not necessarily based on organ shortage. Interestingly, the Nigerian National Health Act 2011 contains provisions relating to organ donation and transplantation. While organ legislation in most Western countries aims to respond to the problem of organ shortage and associated ethical issues, the Nigerian legislation appears to be pre-emptive in nature.
Accordingly, this chapter interrogates the legislative development of organ donation and transplantation in Nigeria, as well as issues relating to the capacity and infrastructures for organ transplant operations in Nigeria, the epidemiological burden of renal disease, and questions of resource allocation arising from the scarcity of healthcare resources in Nigeria.
Organ Transplantation Capacity in Nigeria
Organ transplantation is a routine and standard form of medical care in most parts of the Western world, at least since the 1940s.3 However, in the sense that it involves the use of human body parts as medicine,4 organ transplantation is not a recent phenomenon as it enjoys historical precedent in medicinal cannibalism or anthropophagy prevalent in Europe in the Middle Ages, involving the use of body parts of young people that suffered violent deaths in therapeutic preparations known as mumia.5 Thus, Noble argued that medicinal cannibalism in the sixteenth century has some kindred relationship with the modern global trade in human organs and that both occupy a spectrum of multi-temporality: ‘Belief in the capacity of the human body to heal is the driving force of Western corpse pharmacology and the medical trade in human bodies and bodily matter; this is just as true of today’s medical market as it was in sixteenth- and seventeenth-century England.’6
Accordingly, Scheper-Hughes deployed the sobriquet of late modern cannibalism to describe the current global trade in human organs by analogy to the cognomen of early modern cannibalism which delineates the regime of corpse pharmacology or anthropophagy in the sixteenth- and seventeenth-century Europe.7 Therefore, it is in this historical context that we might ponder Nooraani’s observation that ‘Transplantation has now established itself (in developed countries) as a first line treatment for end stage renal failure, with excellent results’.8
As observed above, however, organ transplantation is not yet a standard medical procedure in Nigeria, and transplantation capacity is still embryonic.9 Over 95 per cent of Nigerian patients in need of transplantation services, especially renal patients, travel abroad for treatment.10 India is the preferred destination of most transplant patients in Nigeria because of its relatively more efficient healthcare system, cheaper cost of transplant services, and the availability of organ donors and brokers.11 Thus, transplant tourism is a medical metaphor that is beginning to take a tight hold in Nigeria.12 As in Nigeria, renal transplant capacity problems exist in other parts of Sub-Saharan Africa.13 In 1993, for instance, Woods observed that the ‘countries of sub-Saharan Africa represent what is undoubtedly the worst case and active ESRD treatment programs which even scratch the surface of the problem are limited to South Africa and Zimbabwe’.14
Unfortunately, the situation has not changed much in the intervening years. For instance, Persy and colleagues observed that only four Sub-Saharan African countries (Nigeria, South Africa, Kenya and Sudan) currently perform kidney transplantation.15 Mauritius should now be added to that number.16 For Nigeria, though, things have slightly improved in recent years. The Lagos University Teaching Hospital (LUTH) established a Dialysis Centre in 1980, reputably the oldest in Africa. However, LUTH did not engage in renal or any other type of organ transplantation.17 Even the dialysis performed at LUTH suffered from perennial power outages and acutely inadequate facilities. As a former dialysis patient at LUTH observed, ‘the facilities were just not there … Immediately we start the dialysis NEPA (electricity regulator) will take the light and all other disruptions. It was a very nasty experience. It got to a stage when all their machines broke down and they could not do the dialysis again for me.’18 However, LUTH has recently upgraded its transplantation capacity and successfully performed its first kidney transplant in 2011.19
Actually, the real first centre for haemodialysis and kidney transplantation in Nigeria was launched in 1990 at the University of Maiduguri Teaching Hospital (UMTH) under the leadership of Prof. Idris Mohammed, a respected (retired) Professor of Medicine.20 Although the kidney centre at the UMTH was well-funded, at least at the time of its establishment, and equipped to carry out both transplantation and haemodialysis, it ended up doing only the latter. For instance, Mohammed observed that it will be ‘extremely hard to find another kidney centre in Africa to compete with the one in Maiduguri for quality, equipment and professional competence in haemodialysis’.21 Mohammed’s emphasis on the UMTH’s competence in haemodialysis shows that despite its possession and installation of sophisticated equipment for kidney transplantation, it did not really possess the professional capacity for organ transplantation. The UMTH only performed its first kidney transplant in 2010.22
Furthermore, in 2004, the Lagos State Government announced plans to acquire kidney transplant equipment for use at the Lagos State University Teaching Hospital (LASUTH).23 However, it is not clear whether the proposed kidney centre at LASUTH has become operational. Other teaching hospitals in Nigeria with significant transplantation capacity include the Obafemi Awolowo University Teaching Hospital, Ile-Ife; the University College Hospital, Ibadan; and Bayero University Teaching Hospital, Kano.24 More generally, Oyekunle observed that the incessant power outages and the sub-optimal medical infrastructures at public hospitals in Nigeria indicate that ‘transplantation activities are likely to be taken over by the private sector and thus be profit-driven, and consequently would be beyond the reach of the average Nigerian patient’.25
True to Oyekunle’s prophecy above, more successful transplantation programmes in Nigeria have been established by the private sector, led by the Lagos-based St Nicholas Hospital. St Nicholas Hospital established its Dialysis and Transplant Centre in 1998; until 2003, it was the only hospital (both private and public) in Nigeria to provide renal transplantation treatment.26 St Nicholas Hospital remains the leading organ transplant centre in Nigeria,27 performing the first ever kidney transplant in Nigeria in March 2000 and has since then performed a total of about 96 kidney transplants.28 Unsurprisingly, St Nicholas Hospital performed the first paediatric kidney transplant in the West African sub-region in 2009.29 The success of St Nicholas Hospital is likely to incentivize the establishment of more renal transplant programmes in other private hospitals in Nigeria, which brings into bold relief the concern expressed by Oyekunle regarding the commercialization of transplantation services in Nigeria. For instance, out of the 160 kidney transplants done in Nigeria so far, the majority was done in private hospitals.30
In sum, the slowly evolving state of transplantation capacity and services in Nigeria logically means that the potential demand for organs in Nigeria is bound to be minimal, in the sense that the sub-optimal transplantation capacity in Nigeria is not able to trigger such a high demand for organs that would raise concerns in relation to supply. Thus, Nigeria is not currently experiencing the problem of organ shortage afflicting most parts of the industrialized world.31 There is no guarantee however that the situation will remain the same for too long.
Legal Frameworks for Organ Transplantation in Nigeria
As the foregoing analysis shows, the sub-optimal transplantation capacity in Nigeria has produced a situation of relative immunity from the problems of organ shortage, but not from the problems of transplant tourism. Thus, Turner has observed that ‘Research into the outcomes of commercial organ transplantation shows that people expose themselves to considerable risk when they travel to poverty stricken regions to buy kidneys’ and that ‘inadequate pre-transplantation screening and testing has resulted in recipients of commercial transplants returning home with cytomegalovirus, HIV, hepatitis, malaria, tuberculosis, and other infections’.32
Nonetheless, Nigeria has legislated pre-emptively on the issue of organ shortage by making provisions for organ donation and regulating the provision of organ transplant services.33 For instance, the National Health Act of 2011 prohibits the provision of organ transplant services except in a duly authorized hospital and with the written permission of the medical practitioner in charge of clinical services at that hospital.34 For that purpose, the National Tertiary Hospital Commission is empowered to develop criteria for the approval of organ transplant facilities, as well as the procedure for securing such approval.35 Similarly, only duly qualified and registered medical and dental practitioners are authorized to render transplantation services.36 Furthermore, the National Health Act prohibits any form of commercialization of human organs. Thus, it is an offence punishable with imprisonment or fine (or both) for a person ‘who has donated tissue … to receive any form of financial or other reward for such donation’ or ‘to sell or trade in tissue’.37 However, the Act exempts reimbursements for reasonable costs incurred by a donor in connection with organ donation.38 More significantly, the Act establishes two sources of organs for transplantation: living and cadaveric donors.39 The analysis below explores this bipartite framework for organ donation, and argues that the Act prefers live organ donation to cadaveric donation.40
Living Organ Donation
It has been estimated that 85 to 100 per cent of all organ donations in developing countries came from live donors.41 This trend can be traced to socio-cultural factors, technological challenges, and inefficient and poorly developed cadaveric transplantation programmes in many developing countries.42 In Nigeria, for example, Dr Ayo Shonibare (President of Transplant Association of Nigeria) observed that ‘Living donors are the only ways for patients to get organs for transplantation and this is a major constraint to the surgery in Nigeria’.43 Even in developed countries, there has been a policy shift in favour of living donation, no doubt in response to the inability of cadaveric organs to fill the ever increasing demand for organs, prompting Price to observe that ‘Not only do some nations rely either entirely or heavily upon living organ donors, but in the face of stagnant or declining deceased donation rates living donation is rapidly on the increase today in many parts of Europe, including the UK, and in other parts of the world, e.g., Australia’.44 In Africa, the extended family system and the general communal orientation of most societies in developing countries have helped to engender a wider pool of living donors. Thus, Bakari and colleagues observed that in ‘Nigeria, there are abundant willing living donors in an extended family setup without coercion’.45
However, there are significant disadvantages and limitations associated with living donation. To start with, living organ donation entails some potentially significant risks for the donors, exacerbated by poverty, poor access to healthcare and the inadequate healthcare facilities under which such donations take place in most developing countries.46 Akoh has observed, ‘Living kidney donors are at risk of developing surgical complications, death, and deterioration of kidney function that may result in need for dialysis and renal transplantation’.47 Similarly, Mani opined that while ‘in the vast majority of cases the loss of a kidney does no harm, however, we also know that a donor can die as a direct result of the operation, either immediately from surgical complications, or later if he himself develops renal disease. I am aware of five donors who lost their lives in this way.’48 Scheper-Hughes discussed the case of a poor Brazilian man who lost his remaining kidney, after donating one to his sister, as a result of an undiagnosed (pre-existing) medical condition, and argued that the case highlighted ‘just how badly a live kidney donation could turn out in a Third World context’.49 Thus, she argued that live organ donation is better characterized as some sort of postmodern sacrifice, and that to describe it as a gift or donation fails to recognize it for ‘what it really is. The sacrifice is rendered invisible by its anonymity, and hidden within the rhetoric of “life saving” and “gift giving”.’50
Furthermore, living donation carries considerable gender implications in most developing countries characterized by male dominance.51 In Pakistan, for example, Noorani observed that ‘the donors, almost all of whom are female, typically have no say in any affair connected to their lives … 95 per cent of donations from live relatives were from sisters, daughters, mothers, female cousins, or from one of several wives’.52 Thus, living donation not only ‘has allowed global society to be divided into two decidedly unequal populations – organ givers and organ receivers’,53 it has also produced a sort of gender underclass in developing countries as a result of which women have become the suppliers of spare body parts. Thus, Scheper-Hughes argued that instead of creating a family bond, living donation conduces to ‘family bondage, less to gifting than to poaching’ and that the available international data ‘indicate a gender bias in living donation, with females the more likely donors’.54 Accordingly, under a discourse she characterized as the ‘Gender of the Gift’, Scheper-Hughes observed that in ‘societies characterized by a high degree of male dominance, pressure is frequently exerted on lower status, poorer, female relatives to “volunteer” as donors’.55 Even then, a study conducted by Naqvi and Rizvi showed that family donors in Pakistan satisfied only 46 per cent of the organ needs of recipients.56 This suggests that live donation might not be sufficient to meet the transplantation needs of a particular locality, especially where organs are sourced only from relatives or family members. Naqvi and Rizvi observed that the shortfall in intra-familial live donation is attributable to certain factors, including health problems in some potential donors, social disincentives for donation (such as being the breadwinner), gender considerations and fear of disability.57
Another significant limitation of live donation is that re-transplants are often difficult to achieve, especially in the context of intra-familial donation.58 For instance, where a familial donation is made and the graft is subsequently lost due to disease or other causes, it would be extremely difficult to get another organ from the family for re-transplantation either because the family considers the second donation an unnecessary sacrifice that would meet the fate of the earlier one, or no more suitable match or donor could be found in the family.59 While unrelated living donation could supplement intra-familial donation to optimize the total number of organs from live donors, it raises significant ethical problems considered below. Nigeria reflects the trend of organ donation based on living donors from the potential recipient’s family. Persy and colleagues observe that ‘except in South Africa, where about half the donor kidneys are from deceased donors, renal transplantation in sub-Saharan Africa is limited to kidneys derived from living donors’.60 In the same vein, Aghanwa and colleagues note that the transplant programme proposed for the Renal Unit of the Obafemi Awolowo University Teaching Hospital, Ile-Ife (one of the only four transplant centres in Nigeria) was intended to be reliant on live donation.61 Thus, transplants done within Nigeria are almost exclusively based on intra-familial live donation.62 Even when the transplant is proposed to be done overseas for a potential Nigerian recipient, it is not uncommon for the donor, a family member of the recipient, to follow the recipient overseas for the transplantation procedure. Unsurprisingly, the Nigerian Health Act of 2011, as shown below, recognizes the importance of living donation.
As with the common law, consent is the guiding principle for living donation under the Act. Thus, a ‘person may not remove tissue … from the body of another living person for any purpose unless it is done (a) with the informed and written consent of the person from whom the tissue … [is] removed’.63 Consent given under the Act can be revoked at any time before the removal of the donated organ.64 Since consent must be informed, the proposed live donor, as in all surgical operations, must be informed of the nature of the transplant procedure and the risks involved. Consent of the proposed recipient of the organ must also be obtained, after he or she has been informed of the benefit and risks of the transplantation procedure. In practice, the donee’s consent would pose no special problems since he or she is intended to benefit therapeutically from the procedure.65 In contrast, the donor faces significant risks, rather than benefits, from the transplant procedure. Consequently, it is important that the donor’s consent is genuine and voluntary.
In the context of intra-familial donation, however, the reality of consent is open to debate.66 Factors such as pressure to help a family member, cultural and societal expectations, role expectations – such as the belief in some Asian countries that a wife ought to do everything to help out a husband in need – might undermine the voluntariness of consent.67 Thus, Price highlighted the frequent argument that ‘potential related donors are unable in any event to give a legitimate voluntary consent in the light of the suffering of their close relative, such as one of their children, i.e. it is not a free choice’.68
Similarly, Fadare and Salako observed that the extended family structure prevalent in most African countries was bound to apply enormous direct or subtle pressure on a potential donor, and that ‘In the African setting, where the family is central to decision-making, the risk of coercion is even greater, and here the autonomy of the donor is totally eroded’.69 There is also the issue of the burden of debt in living donation, in which the recipient feels so indebted to the donor-family member that the latter might use the opportunity of the gift to exploit the recipient post-transplant. Scheper-Hughes identifies this situation as ‘The Tyranny of the Gift’, under which the ‘gift-giver may lord it over the recipient and may feel proprietary toward the recipient of their largesse’.70 Barsoum reflected on the incidence of proprietary control engendered by intra-familial donation, observing:
Even if the good brother is located and all social barriers overcome, some form of reward is expected. This does not need to be money. A precious gift, an expensive flat, a small car or a free share in business may do. I have seen established wills being changed as a part of such deals.71
Since some of these pre- and post-transplantation pressures are not eliminable, insistence on their extirpation would gravely impede related living donation. Thus, Price observes, ‘the notion that in order to be autonomous consent must be given free from circumstantial pressure is spurious. It would rule out a whole host of everyday “tragic choices” which we accept without question.’72 Therefore, in the case of related living donation, Price suggests that the important thing is to establish some ‘screening, assessment and psychosocial support mechanisms both before and after surgery, rather than blanket prohibitions’.73
Furthermore, section 49 of the Act demands that the donor’s consent must be in writing. This is problematic for illiterate donors in Nigeria. Considering that Nigeria has a significant number of illiterate people, it is unlikely that the Act intended to exclude this sizeable proportion of its population from the living organ donation programme. Therefore, it is suggested that the requirement of writing under section 49 of the Act should be taken to have been satisfied if there was compliance with the provisions of the Illiterates Protection Act.74 Section 3 of the Illiterates Protection Act provides that where a person writes a letter or document at the request of, on behalf of, or in the name of an illiterate person, then the writer must write their name and address on the document in order for the illiterate person to be bound by the document.75 The Illiterates Protection Act does not, however, apply to documents prepared by legal practitioners at the request of or on behalf of an illiterate person.76 Thus, transplant centres and potential recipients should ensure that, in the case of potential illiterate donors, there is compliance with the Illiterates Protection Act.
Interestingly, the National Health Act does not distinguish between related and unrelated living donation.77 For instance, the Act provides that only ‘a registered medical practitioner or dentist may remove any tissue from a living person, use tissue so removed … or transplant tissue so removed into another living person’.78 Thus, the potential recipient of organ from a living donor or ‘another living person’ under section 53(1) of the Act could be any person, not necessarily the relative of the donor. Consequently, no special legal or procedural hurdle has been placed on living organ donation to unrelated recipients in Nigeria. The Act’s liberalization of unrelated living donation resonates with arguments that unrelated transplants produce better outcomes, in terms of survival rates, than cadaveric transplants.79 The liberality of unrelated living donation under the Act also accords with the reality of transplantation in Nigeria where cadaveric programmes are almost nonexistent and organs are currently sourced exclusively from living donors.
While unrelated donation increases the pool of potential live donors, it raises concerns relating to the commercialization of organs, as well as the motivations of unrelated live donors.80 Within the context of India, for instance, Mani argued for the prohibition of unrelated live donor programmes, observing that such programmes risk the exploitation of the poor by the wealthy and potential recipients of organs, and by organ brokerage firms.81 Furthermore, Mani observed that ‘One of the greatest objections I see to unrelated live donor transplantation is that it works against the establishment of cadaver organ donation’.82 In the case of Pakistan, Noorani noted that ‘brokers busily scavenge for desperate, poor people to meet the constantly increasing demand for kidneys by foreigners’.83 More generally, the grisly nature of trade in human organs, involving unrelated live donors, has been vividly described by Chugh and Jha.84 In Nigeria, more particularly, a recent newspaper report has accused a private medical practitioner of illegally harvesting the two kidneys of a poor patient who presented himself for treatment of typhoid fever.85
In a more recent ethnographic and in-depth sociological study on kidney vendors in Pakistan, Moazam and colleagues opine that the argument for a sort of regulated market for organs is reductive, parochial and cavalier, in that it ignores the realities of the vendors’ emotional, economic, health and psychosocial lives post-transplant.86 Furthermore, Moazam and colleagues observe that although settlement of debt is the main reason for selling a kidney, the vendors often accumulated greater debts post-transplant and, after the nephrectomy, perceive themselves as incomplete, useless, or incapable of working as hard as in the past.87 Moreover, Moazam and colleagues observe that the ‘sale of a kidney by one family member can inevitably lead to subtle and not-so-subtle pressure on others to follow suit, and it carries with it the potential for the eventual stigmatization of individuals and of whole communities as organ “sellers”’.88
To avoid the commercialism in human organs above, some jurisdictions prohibit or, at the least, impose stricter consent procedures on unrelated living donation. For instance, Egypt criminalizes organ donation by Egyptians to foreigners with a view to hindering the development of an organ market.89 Prior to the promulgation of the Human Tissue Act of 2004 in England and Wales, unrelated living donation had to be approved by a separate body called the Unrelated Live Organ Transplants Regulatory Authority (ULTRA).90 Donation from genetically related donors was outside the remit of ULTRA. However, the Human Tissue Act of 2004 established a unitary system covering both genetically-related and unrelated donors, under which all living donations must secure the approval of the Human Tissue Authority.91 Consequently, the Human Tissue Authority has made regulations specifying the procedures that must be adopted in relation to living donation.92 By not singling out unrelated living donation for legislation, Nigeria appears to adopt the current approach in England and Wales.
Furthermore, the National Health Act of 2011 prohibits live organ donation ‘from a person who cannot give consent … [and] from a person younger than 18 years’.93