Introduction
Ethical concerns accompanied clinical transplantation from its inception. Dr. Joseph
Murray, (1919–2012) who performed the first successful living donor kidney transplant
in 1954, was concerned about the ethics of removing a vital organ from a normal, healthy
human being.[[1]]
The perpetual shortage of donor organs continues to generate debate about the ethical
principles applied in transplantation medicine. Several living donor issues continue
to stimulate discussion and research interest.[[2]],[[3]],[[4]],[[5]] These include donations in the presence of hypertension, diabetes, and donations
from the elderly. Other ethical concerns emerged with procuring organs from brain
dead donors. Obtaining proper consent, separation of the event of death to the family,
organ donation approaches, procuring organs from older donors, risk of transmission
of disease, and donation after circulatory death are among such concerns.[[6]]
Solid-organ transplantation in the Middle East and North Africa region began in Iran
in 1968 and other countries followed. By 2012, there were 31,280 renal transplants,
with 92.9% performed in five countries (Egypt, KSA, Iraq, Syria, and Jordan); 3407
liver transplants: 91.9% in Egypt and KSA; 301 heart transplants: 87.7% in KSA and
Lebanon; and 62 lung transplants: 61 in the KSA.[[7]] In many countries, transplantation has evolved through distinct stages of development,
and at present, living-related donors continue to be the primary source of transplant
organs.
The field of transplantation is packed with questions about guardianship and allocation
of scarce resources (stewardship) and physician–patient relationship, in addition
to principles such as altruism, autonomy, sanctity of life, and end of life questions
including when precisely does life end.[[8]],[[9]],[[10]],[[11]],[[12]],[[13]]
An early account by Daar[[14]] indicated that Islamic opinion is in favor of transplantation of organs from both
living and deceased donors.[[14]] Muslim jurists allowed bone grafts (autograft, allograft, and xenograft) for widely
broken bones. Ibnosina discussed this subject in 1037 in his book Al-Kanoon. In 1959,
the Muftis of Egypt and Tunisia allowed, under specific conditions, corneal transplants
from dead persons.[[15]] Thereafter, many fatwas (jurisprudence) on organ transplantation were issued from
different parts of the Muslim world. In Amman, Jordan, the International Islamic Jurist
Council recognized brain death as a recognized sign of death in Islam in October 1986.
In 1990 and 2003, the International Islamic Fiqh Academy and the Islamic Fiqh Academy
issued important fatwas on organ transplantation.[[16]]
Despite these fatwas, various Muslim scholars' opinions on organ transplantation and
brain death are far from unanimous. Opinions vary from a person's body being amānah
(trust) from Allah that he/she has no right to part with any part of it, to the sacredness
of the human body that considers it act of aggression against the human body, tantamount
to its mutilation, if organs were to be removed after death for transplantation.[[17]] On the other hand, medical practice in Arab countries is a hybrid of several systems
dependent on past prenational economic developments. This review is focused mainly
on the general aspects of transplantation ethics in the Arab countries.
Results
Most of the publications cover kidney or liver transplantation. Several themes emerged
from the review process. The themes are not preset but reflect the available literature
retrieved by the authors [[Table 1]].
Table 1: Emerging themes from the literature that constituted the basis of the current review٭
Organ shortage and the unresolved issue of deceased organ donation
The issue of deceased organ donation (DOD) remains problematic in the region. Patients
and their families are often left to seek alternative kidney transplant routes such
as buying kidneys from living unrelated donors through transplant tourism.[[17]] A review by Paris and Nour addressed the ethical use, procurement, and allocation
of donor organs in Egypt. They concluded that the Egyptian system does not legally
recognize brain death, which encourages illegal trade in transplant organs.[[18]] There is no consensus about the definition of brain death by the Egyptian medical
community.[[19]],[[20]]
Contrary to a prevailing idea that opposition to DOD in Egypt is related to Islamic
concerns, Hamdy[[21]] drew on Egypt's ethnographic fieldwork. She argued that the main problems are how
to guarantee the protection of vulnerable individuals, equitable distribution of organs,
and fair access to health care. However, the public is confused about Muslim scholar's
stance on brain death and deceased donation. Further work is needed to educate the
public and Islamic scholars on criteria and the need for brain death and DOD.
Questions about deceased donation faced by medical professionals practicing in the
Arab world were addressed in a couple of studies. Muliira and Muliira conducted a
literature review examining nurses' roles in working with Muslim potential deceased
organ donors.[[22]] Despite manifesting several stereotypical views about Muslims and their perspectives
on important issues, the authors concluded that nurses need to be educated. They need
to know that organ donation is permissible by the majority of Muslim scholars despite
differences in opinions.
In another study by Alwadaei et al., 12 western-educated doctors were interviewed
in Bahrain; a Muslim country with dominant western culture.[[23]] The study highlighted the difficulty doctors faced in engaging nonmedical people
in end-of-life decisions because of their reluctance to talk about death and ambiguity
of current law regarding the boundaries of medical responsibilities. There were divergent
views among doctors from those who considered end-of-life decisions purely medical
to those who thought of it as purely religious. Physicians are left threading a fine
line between their often western training about informed consent, for example, and
a prevailing sociocultural view of “doctor knows best” (or at least should), in the
presence of a rising culture of litigation.
Bioethical considerations in living organ donation
Due to a lack of DOD, living donor transplantation filled the gap in managing end-organ
failure. Therefore, early ethical concerns focused on living donation. Daar et al.[[24]] proposed a classification of living donor renal transplantation under five categories:
(1) living-related donation; (2) emotionally related donation; (3) altruistic donation;
(4) “rewarded” gifting; and (5) rampant commercialism.[[24]] Categories 1, 2, and 3 they argued were resolved, 4 remain hotly debated (even
today), while category 5 is blatantly unethical.
Qatar is a multiethnic society with differences in language, socio-economic status,
and cultural barriers. This situation created a significant challenge to the growth
of their kidney transplant program.[[25]],[[26]] The possible economic impact on donors and the potential for exploitation of economically
disadvantaged for transplant commercialism. To protect living kidney donors (LKDs),
the Organ Donation Fund was created in 2001 to compensate living donors for any costs
or loss of earnings they might incur during the donation process.[[24]],[[26]]
Abdeldayem et al.[[27]] analyzed living liver donors' motives among 193 consecutive living-liver donors
between 2003 and 2013 at Menoufia, Egypt. In their group of donors (mean age 26 years),
two-thirds were males, offspring donating to parents were 32%, and parents to their
offspring 15%. For many donors, donation seemed an attempt to reduce their anxiety
and handle the fear of losing a beloved person to a life-threatening disease. For
others, the wish to maintain the relationship with the recipient was a common argument
often expressed by spouses. The authors could not be confident of the absence of coercion
during the liver donation process but argued that serious effort is made to ensure
the voluntary nature.
Wahab et al.[[28]] reported their experience of the impact of exclusion of potential LKDs from donation.
792 out of 1004 potential living liver donors were excluded in this single-center
study in Mansoura, Egypt. 639 (80.7%) potential donors were excluded by the transplant
team for medical or psychosocial reasons, while 18.7% withdrew themselves during the
process and in 5 the family declined donation. Interestingly, 96.2% of liver transplant
recipients in this study had previous experience with multiple potential donors. In
the absence of deceased donor programs, searching for a potential suitable donor by
simultaneously screening and evaluating multiple potential donors carries significant
cost implications and can result in over emphasis on the medical criteria for living
liver donation while overlooking the voluntary and altruistic nature of living donation.[[28]] The same practice may lead to potential donors be put under undue pressure, or
even be coerced into donation.[[29]],[[30]]
Evaluating potential living donors is a demanding process for the potential donor,
their families, and is a resource intensive endeavor. The realization rate of potential
kidney donors is around 25% and identifying donors who are more likely to complete
the process and end up actually donating can save significant amounts of time and
effort, not to mention the anguish of all parties concerned.[[31]],[[32]]
Attitudes toward organ donation
Information about the attitudes toward organ donation in the Arab countries is the
result of multiple surveys of patients, relatives, professionals, and public members.[[33]],[[34]],[[35]],[[36]],[[37]],[[38]],[[39]],[[40]],[[41]],[[42]],[[43]],[[44]] According to an extensive multicenter survey in Saudi Arabia, Bahrain, and Egypt
by the Renal Transplant Study Group, end-stage renal disease patients tended to take
the initiative in seeking living unrelated renal transplantation, despite physician
discouragement, and the significant financial burden.[[33]]
A survey of 702 Tunisian physicians, nurses, and technicians by Tebourski et al.,
59% were favorable toward organ donation.[[34]] Humane reasons were the main rationale for acceptance of organ donation, while
religious reservations (26.4%), personal reasons (20.9%), and no specific reasons
(22.8%) were cited for refusing organ donation. Intensive care unit staff in a tertiary
in Saudi hospital were surveyed by Alsultan in 2011 when 80% of the 154 participants
acknowledged that organ donation is a legal practice in Saudi Arabia, but nearly a
quarter were unaware of their hospital's organ donation policy.[[35]] Only 57% were willing to donate their organs. In another study from Saudi Arabia,
698 adults attending outpatient clinics at a tertiary care hospital were surveyed
about their views on various forms of consent for DOD.[[36]] The authors showed that most respondents were in favor of DOD, a mandated choice
system was the most preferred and presumed consent system was the least preferred
option.
A survey in Morocco targeted various officials related to organ transplantation as
well as leaders of ethics committees and religious groups for their views about organ
donation.[[37]] Respondents indicated their preference for promoting living organ donation initially,
followed by the gradual introduction of measures to encourage DOD. It was interesting
to note that respondents expressed an ambition for a rather relatively high DOD rate
(30/million). A large proportion of participants (93%) suggested a “suitable moral”
motivation for organ donors. In another study from Morocco, Flayou et al. studied
the attitudes of the medical staff toward organ donation.[[38]] A third of respondents knew about the law that governs organ donation in Morocco.
Participants expressed more willingness to donate organs after death than during their
life (82 vs. 66%), and reasons for refusal of organ donation included a misunderstanding
of risks, desire for respect of the corpse, in addition to religious and ethical motives.
Furthermore, Alashek et al. indicated that 30% of survey participants favored donating
their organs after death, while 60% refused and 10% were undecided.[[39]] Those willing to donate tended to be young, single males with a college degree
or higher, while lack of adequate knowledge about the importance of DOD and uncertainty
about its religious implications were the main reasons for refusing it. The effect
of educational sessions on attitudes about organ donation was studied by Hammad et
al.[[40]] They surveyed 2682 adults (age 18–70 years) before and after a teaching session
on brain death and organ procurement. Respondents were questioned about circumstances
of death, the conditions of conversations around organ donation, and reasons for acceptance
or refusal of donation. Prior to the educational session, 72.1% reported they understood
brain death versus 88% after the teaching session. The concept of brain death was
accepted by 64% versus 68% before and after teaching, respectively. Presumed consent
was agreed to by 35% before versus 40% after the intervention. Fifty-one percent of
participants thought their religion was against brain death versus 58%. While 51%
wanted to carry a donor card before teaching (vs. 59% after), and those who were agreeable
to consent to organ donation in case of brain death of a relative (46% before vs.
56% after), the proportion of respondents actually carrying a donor card did not change
before and after the educational session (11.3%). El Hangouche et al.[[41]] evaluated the knowledge and perception of the public in Morocco toward organ donation
as well as to identify the reasons and determinants for refusal of organ donation.
This opinion survey included a representative sample of 2000 participants. They showed
55.2% of the participants were women, the median age was 21 years, and 60.8% of included
participants had secondary education. Almost two-thirds showed a low to mid-level
of knowledge about organ donation and transplantation in Morocco. About half of the
participants refused to donate their organs. Concern about risk of medical error and
the belief in trafficking of procured organs were the main reasons for refusal, seen
in 66% and 62% of the interviewees, respectively. Regression models showed that the
older, the less educated, and the less informed a person is, the less he accepted
organ donation. The authors concluded that promotion of organ donation in Morocco
should involve a regular information and awareness among the general population. In
another study, Alam[[42]] evaluated factors affecting the knowledge and/or attitudes of the Saudi Arabian
public with respect to organ donation and transplantation in a cross-sectional study
on 948 participants between 20 and 60 years of age during 2005. The study revealed
that 58.5% of participants heard about the existence of SCOT, 91.1% knew the need
for organ donation, and 92.7 knew that organ donation could save lives. The organ
donation campaign was known to 62.3% of the participants. Of these participants, 57.9%
were made aware of organ donation campaigns through TV ads, 52.8% from magazines and
newspapers, and 11.7% from scientific sources. While 23.7% of the participants were
unaware of any issued Islamic fatwa regarding organ donation, another 36.1% did not
respond to this question revealing a lack of knowledge. Forty-two percent of the respondents
agreed to donate their organs after death. Among the various reasons against organ
donation, 27.5% feared that the act of organ donation contradicted their religious
beliefs, while 3.5% believed that there was no benefit to organ donation. It is concluded
that a need for proper information dissemination exists. A multidisciplinary approach
is suggested including government support backed by strong recommendations from knowledgeable
religious sources. More recently, Tarzi et al.[[43]] evaluated the attitude and knowledge of organ donation among Syrians and the willingness
of this population to donate their organs. A cross-sectional study in four hospitals
in Aleppo, Syria in November 2019. Involved a total of 303 participants. The majority
of participants (82%) heard about organ donation with television (55%), social media
(25%), and the internet (25%) being the most common sources of information. When assessing
knowledge about brain death, only 40% answered 3 or more questions (out of 5) correctly.
Fifty-eight percent of respondents agreed with the idea of organ donation and 62%
would like to donate their organs 1 day. The leading motivation to organ donation
was the desire to help (77%), while the most common reason to refuse donation was
the refusal to disfigure a dead body by removing an organ (41%). Religious reasons
were cited as motivation for organ donation by 43% of participants and a reason for
refusing to donate organs by 24% most respondents (88%) were unaware of the laws and
legislations related to organ donation in Syria. When asked if religion and law were
encouraging organ donation, 76% of respondents would donate their organs. Although
more positive attitude was found in those with better brain death knowledge (score
≥3), this did not translate into more willingness to donate organs in this group of
participants. Palestinian university students from Nablus were surveyed by Al-Labadi
et al.[[44]] about their knowledge and willingness toward corneal donation.[[44]] Of the 634 students who completed the questionnaire, 93% were unaware of the existence
of an eye bank, and 407 did not show willingness toward corneal donation. Disapproval
by the family was the most common reason for unwillingness to donate a cornea.
Notably, several of these surveys did not seem to include questions about receiving
a transplant organ for self or a close relative. Budiani-Saberi and Mostafa[[45]] identified three specific areas to be addressed in order to promote organ donation
and protect living donors: Legislation to govern brain death and deceased donation,
the criminalization of the buying, selling, and brokering of organs from live donors;
and a sustained public education program about organ donation and brain death to target
the medical, religious, academic, and legal institutions.
Outcome of commercial organ transplantation
The shortage of live donor transplant organs and the lack of DOD programs led many
patients and their relatives to seek transplant organs abroad. In one study by Al
Rahbi and Salmi,[[46]] unavailability of a live-related donor was the main cited reason for seeking a
commercial transplant (71%). Other reasons included objection and anxiety about getting
a kidney donated by a family member (13% and 9%, respectively), in addition to a perceived
need for a prompt transplant (3%). Few years ago, China, Philippines, Egypt, and Pakistan
were well-recognized destinations for those seeking commercial transplants. In fact,
Egypt was called out by the WHO as 1 of 5 organ transplant “hot spots” in the world.[[47]] Transplant tourism has serious ethical concerns due to the exploitative nature
of the practice, and the international swell of opinion against it has culminated
in the Declaration of Istanbul, an international document banning the trade in human
organs.[[48]],[[49]],[[50]],[[51]],[[52]],[[53]]
Several studies have reported on complications of commercial organ transplantation.
In two studies predating the Declaration of Istanbul, Qunibi[[54]],[[55]] retrospectively reported on 540 patients who had received commercial renal transplantation
in India between 1978 and 1993,[[54]] and compared the findings with those of 75 recipients of living-related renal transplantation
performed in two participating centers in the Middle East.[[55]] Despite patient and graft survival rates being similar in recipients of commercial
and local transplants, infections such as HIV and hepatitis B virus were more in the
commercial transplant group. Ben Hamida et al.,[[56]] on the other hand, highlighted the poor outcome of commercial renal transplantation
in twenty cases seen in Tunisia between (1995 and 1999), 14 transplanted in Iraq,
and 6 between Egypt and Pakistan. All were living unrelated commercial kidney transplants
costing USD 10,000 each.[[56]]
Abdeldayem et al.[[57]] reported on 15 patients who received liver transplants in China and concluded that
11 of them had no suitable donors or no donor in Egypt. Patient survival at 6 and
12 months was 80% and 73%, respectively. Four patients died, 2 while still in China,
and 82% of the survivors developed complications.
By 2018, Oman, 42 living unrelated donors (LURD) commercial pediatric kidney transplants
were reported over a 22-year period.[[58]] In the same report, living related donors (LRD) transplants had better patient
and graft survival, and fewer surgical complications than LURD renal transplants 42.8
versuss 17.8%. A similar previous study from Oman highlighted the disruptive nature
of commercial transplantation on the local transplant programs by taking the pressure
off health-care officials to further develop the full array of local DD and living
donor programs.[[59]]
In the post DOI era, AlBugami et al.[[32]] reported on the outcome of 86 kidney transplant tourists compared to local kidney
transplants. Patient and graft 1 year survival were worse in the commercial transplant
group (91% vs. 98%, P < 0.001 and 87% vs. 98%, P < 0.001, respectively).[[32]] In addition, transplanted tourists had a higher rate of acute cellular rejection
(20% vs. 7%, P < 0.001), with higher rates of serious viral, bacterial, and fungal
infections compared with the locals.
Living organ donors who fall victim to commercial transplant practices continue to
suffer after their donation. For a start, they may have not been candidates to donate
to start with, in addition to the lack of long-term care postdonation. Organizations
such as the coalition for organfailure solutions try to fill this gap by conducting
outreach programs that include identifying victims of organ trafficking, assessing
their consequences, and arranging support services.[[60]] Paradoxically, the international ban of commercial transplantation following the
DOI may have driven transplant tourism further into the black market, with such transplants
now performed in appalling settings.
Beyond the declaration of Istanbul
The Transplantation Society and the International Society of Nephrology developed
the Declaration of Istanbul on Organ Trafficking and Transplant Tourism in May 2008.[[48]] Its principles included the condemnation of transplant commercialism, organ trafficking,
and transplant tourism, and it underlined the urgency of putting the principles into
action. The declaration and its principles were soon endorsed by various professional
bodies and governmental organizations. The Declaration of Istanbul Custodian Group
(DICG) was subsequently formed and sought to promote and uphold the DOI principles,
and encouraged cooperation among professional bodies and various international and
national organizations. Some of the repercussion of the declarations are presented
in [[Table 2]].[[49]],[[50]],[[51]],[[52]],[[53]] For instance, at a fifth anniversary meeting in Qatar in April 2013, the DICG took
note of progress made and set forth in a Communiqué a number of specific activities
and resolved to further engage groups from many sectors in working toward the Declaration's
objectives.[[49]] Trading in transplant organs may be a criminal offence that governments can prosecute
when committed in their territories. Organ brokers, however, tend to orchestrate their
activities across borders, and in parts of the world where they know they will not
be prosecuted. The DICG suggested that states be encouraged to include provisions
on extraterritorial jurisdiction in their laws on transplant-related crimes.[[50]] A call has also been made to encourage collaboration between professionals and
international authorities to develop a global registry of transnational transplant
activities.
Table 2: Publications on the repercussions of the “declaration of Istanbul and beyond” pertaining
to practice in the Arab countries
Patients who return home after receiving commercial organ transplant abroad present
health-care professionals and authorities with a challenging ethical dilemma, not
to mention the medical and legal problems that arise. Duty of care dictates that such
patients are provided the care posttransplant patient needs. This, however, may lead
inadvertently to promoting transplant tourism by way of real-life examples. Any apparent
ease with which transplant tourists are accepted back into the system of care in their
home countries, may also be deleterious to local transplant programs. For patients
who can afford it, why have a family member go through the donation process and part
with one of their kidneys are part of their liver if they can buy it abroad, and return
to seamlessly resume care at their local transplant unit. With emphasis on tracing,
registration, and reporting of such episodes of commercial transplantations, the DICG
suggested a set of recommendations that included the resumption of posttransplant
care for returning transplant tourists.[[51]]
Expansion of the donor pool
The demand for transplant organs exceeds the supply. Such demand led to attempts to
expand the donor pool to include donation after circulatory death, broader living
donor criteria, and exchanged paired kidney donation.
Al Sebayel et al. 2014 reported a 7-year experience of a mobile donor action team
in Riyadh, Saudi Arabia, to promote DOD.[[61]] They pursued an “aggressive approach toward organ donation through field work and
provision of incentives for donors' families and the health workers dealing with the
donation logistics.” Although the authors concluded this intervention had increased
deceased donation rates (3-fold increase) in Riyadh, and that it is “ethically and
morally accepted,” the approach raises more questions about the quality of consent
obtained in such, usually, tragic circumstances associated with brain death, and of
a possible moral hazard in incentivizing health professional to increase organ donation.
Shaheen et al.[[62]] argued that appointing an organ donation coordinator may result in early identification
and better donor management, which may help the donor pool. The authors drew from
the Spanish and US experiences of similar schemes that resulted in significant DOD
improvements. Shaheen et al. concluded that the current Saudi rate of deceased donor
donation of 22 possible deceased donors per million population and a 20% procurement
rate can be much improved through adoption of a Saudi Proactive Detection Program.[[63]]
Other initiatives included moving to a presumed consent for deceased donors and compensation
of living donors.[[64]] Both approaches come with significant ethical concerns attached. The presumed consent
model raises questions about the state owning its citizens body parts after their
death, and utilizing them as a national resource, in addition to raising the prospect
of litigation by families who do not recognize brain death as a concept. Some find
it difficult to differentiate very clearly between buying organs and payments made
to organ donors, often made as compensation for loss of earnings.
A shift toward some form of reward to organ donors has become more noticeable, Qatar
and the US being recent examples.[[64]] Yacoubian et al.[[65]] examined the various spectrum of donor compensation models; from reimbursing costs
and lost earnings, to monetary or nonmonetary forms of appreciation without direct
intention to encourage donation (rewarded gifting) to a market model. Some governments
created monetarily valued and socially valued incentives for prospective living-anonymous
donors. Khetpal and Mossialos reported on the case of six countries with established
living-anonymous kidney donation practices included two Middle Eastern countries (Iran
and Saudi Arabia).[[66]] The six countries used different packages of incentives to encourage living donation.
The authors concluded that the degree of altruism expressed could be stratified into
four models; with Iran occupied the least altruistic model and Saudi Arabia was among
most altruistic.
Donation after cardiac death (DCD) is another strategy to expand the donor pool. This
form of DOD remains shrouded in controversy in the Arab world, not least because the
donation after brain death (DBD) is yet to be universally accepted in most jurisdictions
in the Arab world. Hence, adding yet another form of deceased donation can be expected
to lead to more confusion among the public, and possibly even among health-care workers.
Both DCD and DBD approaches must comply with the “dead donor rule” in that the potential
donor must be dead before organ retrieval. In addition, death must neither be caused
nor hastened by the organ retrieval team.[[67]] Significant efforts lie ahead at professional and societal levels before DCD programs
can be more widely acceptable in the Arab world. Reflecting on one's own personal,
institutional, and national experiences, achievements, and challenges can be very
rewarding.[[68]]
Islamic perspectives
The Arab countries are a Muslim-majority region. Predictably, the moral guidance on
the organ transplantation will consider the religious principles and religious roots
of cultural norms and practices. Several authors considered these issues from a bioethical
and religious view point. A detailed discussion of the subject is beyond the scope
of this review. However, a limited bibliography is included in [[Table 3]] to provide a guidance to readers on the extent of interest in this aspect of the
topic. To prevent duplication, these are not included in the list of cited literature.
Some of the authors focused purely on the religious aspects and others included comments
on practices and how these principles are perceived and practices [[Table 3]].
Table 3: Limited bibliography of additional articles focusing on Islamic perspectives on the
moral and ethical challenges in organ transplantation
