Abstract
Organ donation and transplantation medicine has posed challenging ethical problems ever since the first
successful human to human heart transplant was performed in December 1967. In an effort to solve the
conundrum of obtaining healthy living organs from dead bodies, the medical profession introduced a new understanding of death in 1968, then in the 1990s a new protocol for declaring death in dying patients was introduced and more recently an opt-out system for end-of-life organ donation has been enacted into law in Great Britain. Under this new opt-out system informed consent is not required, consent for organ donation is presumed (deemed) for adults unless belonging to an exempted group.
This paper challenges the morality of presumed (deemed) consent imposed on British Muslims, the majority of whom do not support deceased organ donation. The author puts forward an argument that British Muslims should be exempted from the new organ donation opt-out law on religious grounds and puts forward some ideas which could be used to accommodate Islamic beliefs in end-of-life organ donation amongst British Muslims.
Introduction
Organ transplantation has been a real success story of modern medicine. It undoubtedly improves and saves the lives of thousands of people every year. But there is a worldwide shortage of organ donors. No religion formally forbids organ donation or receipt of organs from the living. However, deceased organ donation is discouraged or even forbidden by some religious authorities. And some ethicists consider the practice to bemorally flawed3,4on three main accounts: the organ donors are not truly dead, the potential organ donors are not told the whole truth, and the organs are removed without an informed consent in place.
These ethical objections have been raised since the
world’s first successful human to human heart transplant
was performed on 3rdDecember, 1967, in South Africa
As the heart transplant surgeon Christiaan Bernard came
out of the operating theatre after having performed the operation he was met by the local media who asked him if the donor was dead when he removed her heart In the first heart transplant performed in Israel at the
Beilinson Medical Center in 1968, no consent was
obtained and the donor’s family was not even informed
The source of the donor heart was hidden by the hospital.
Only after applying to the health minister, demanding full
disclosure, did the family discover the truth.
Only months after the first successful heart transplant the concept of brain death was introduced, and this faciliatated the availability of suitable organs for transplanatation . The brain death concept redefines what it means to be dead
by declaring individuals with irreversible coma and loss of capacity to breathe as dead even though they may not have a single organ in their bodies which is dead. Brain death is a condition sine qua non for the transplantation.
of viable organs such as the heart. Indeed, the main
reason for introducing the concept of brain death was to
increase the number of organs available for
transplantation7.The brain death concept has undergone
several ad hoc revisions designed to protect it from
empirical falsification, but it still remains controversial
In the 1990s, a new protocol was introduced to increase
the supply of organs for transplantation to meet the high
demand.10This new protocol is called donation after
controlled circulatory (or cardiac) death, DCD for
short11.The guidelines for DCD were published in 2008
in the UK12.Even this did not solve the shortage of organ
for transplantation so further intervention was needed.
The latest intervention in Great Britain (England,
Scotland and Wales) involves switching from an opt-in
system to an opt-out system for deceased organ donation
thereby removing the need for expressed consent. Thenext step to increase organ donation numbers may be legalisation of organ donation euthanasia as its social and ethical acceptance increases.
What is Consent?
In a free, democratic society, an individual has the right
of self-determination, the freedom to do with their body
as he or she wishes. From a religious perspective, there
are obviously some limitations to this freedom. This right
that an individual has over his or her body prohibits
others from interfering with the body without the
individual’s consent. So this right is by default negative
it is like a barrier which protects the right to a private
domain. This barrier can only be legitimately crossed by
a positive authorisation which we call consent. This
consent then allows access to the private domain for a
specific purpose only, such as a particular specified
surgical procedure or medical examination.
The need for consent before any medical intervention is
firmly embedded in modern healthcare. Doctors have an
ethical obligation to respect patients’ autonomy – that is
their right to be involved in decisions that affect them.
Consent must be given voluntarily by an appropriately
informed patient who has the capacity to exercise a
choice.
Consent is not an intention in the mind or the heart but a
public declaration of intention, either verbal or in writing
Consent is a voluntary declaration. So, can consent be
presumed?
What is Presumed(Deemed) Consent?
Consent is a legal requirement for removal of organs or
tissues under the Human Tissue Act 2004 (HTA)
Under the new Deemed Consent Act (2019) every
adult is deemed to have consented to have their organ
removed for transplantation unless the individual has
registered to opt-out or a person who stood in a
qualifying relationship to the person concerned
immediately before death provides information that
would lead a reasonable person to conclude that the
person concerned would not have consented.
A presumed (deemed) consent policy denies organ
donors the same ethical safeguards of informed consent
that define advance decision making in other areas of
medicine17.
Presumed Consent is not Informed Consent
The UK General Medical Council’s guidelines on
consent18 state that there should be exchange of relevant
information specific to the individual patient and that all
patients have the right to be given the information they
need to make a decision and the time and support they
need to understand it.
To “presume” by default that we (doctors) have
“consent” to remove organs from a deceased person
because there is no prior statement from him/her against
such an action cannot be said to meet the universal
criteria for a valid consent as understood by the medical
profession nor the HTA’s own definition of a valid
consent15(page 48). Presumed consent is not actual
informed consent19.
Furthermore, removing organs from someone who has
not given expressed consent is more akin to taking organs
rather than donating organs.
Justifying Presumed Consent for Organ Donation
Presumed (deemed) consent can be morally justified in a
secular society20. An argument can be made that it should
be the duty of every citizen to donate his or her organs on
death. Not doing so is morally wrong because the lack of
organ availability leads to unnecessary deaths
Furthermore, surveys have shown that the majority of the
UK public support organ donation. From a utilatarian
perspective, the adoption of presumed consent makes
considerable sense. People hold their organs in
stewardship for society, and when they have had their
full benefit from the organs, it is time to pass the organs
onto other individuals in society who can continue to
benefit. In this way, presumed consent provides the
greatest good for the greatest number of people by
supposedly harming no one and benefiting many.
While presumed consent for organ donation can be
justified in Western bioethics based largely on human
reasoning, the same does not apply to Islamic bioethics
which are based on Islamic law.
Are Organ Donors Actually Dead?
“Are organ donors actually dead?”Simply put, “No
The criterion of brain death does not meet any acceptable
concept of death23.There have been several cases reported
of some reversible brainstem function in patients
declared brain dead24,25,26,27,28.
In the UK, there are just over 6,000 individuals waiting
for an organ transplantation and about 600,000 people die
every year. Based on these figures there should be no
shortage of deceased organs. The reality is that solid
organs from truly dead people are not suitable for
transplantation, because their organs are dead. Only
organs from living individuals are suitable. This is
sufficient evidence that organ donors are not actually
dead.
In current medical practice in the UK, organ donation is
of two types: organ donation after brain death (DBD)
organ donation after controlled circulatory death
(DCD)29.Declaration of death, both for DBD and DCD
takes place in an intensive care unit setting. In both DBD
and DCD, the donors are not truly dead30,31,32,33,34
Some ICU clinicians and peri-operative nurses have
objected to participating in organ procurement because it
is against their conscience.35,36
Mufti Butt, a UK based Islamic scholar, in his detailed
fatwa37 commissioned by the NHS (UK), concurs that
from an Islamic perspective neither DBD nor DCD fulfil
the criteria of death38.The fatwa was released a year
before the new opt-out law was introduced in England in
2020. Unfortunately, the crucial message was not clearly
communicated in the fatwa (which is 111 pages long) nor
in the fatwa summary. Much of the media along with
some individuals and organisations involved with
promoting organ donation completely misunderstood the
fatwa39, thinking the fatwa gave the UK Muslims the
green light for deceased organ donation. In reality, the
fatwa approved deceased organ donation in principle
only. The fatwa did not consider organ donation as
currently practiced in the UK to be permissible because
Butt does not consider the donors to be Islamically dead.
Does the Public have the Right to the Whole Truth?
Telling the truth in a transparent manner is an established
principle of good ethics40 and is particularly important
where information is communicated by Muslims in a
mosque. Disclosure of all facts essential for informed
consent17. However, the whole truth about what organ
donation entails is often kept from the public
because of the possible consequences, on the assumption
that revealing the whole truth may lead to refusal to
donate organs. The public is provided with educational
material that encourages donor registration without
mentioning the possible negatives consequences of organ
donation35.
The priority of the organ donation education programs
aimed at the UK Muslim population has been to change
negative views towards organ donation with the objective
of improving organ donation rates by increasing
awareness of the societal needs and religious
permissibility. Initial data suggests that some of these
programs achieved their desired objective. Although in
the past such unidirectional religiously oriented
interventions in Muslim communities have proven to be
ineffective43.
Maintaining public trust requires not only that doctors are
loyal to their patients, but that their actions be entirely
above suspicion in this regard. Public mistrust plays a
significant role in limiting the number of organ
donations.
If the whole truth is not revealed then presumed
(deemed) consent is not only morally objectionable, it is
not a valid informed consent
A Moral Dilemma for Muslims
On the principle of reciprocity if a Muslim is willing to
receive an organ he should be willing to donate his
organs.
However, if one does not accept brain death and
controlled circulatory death as actual death then
“deceased” organ donors are not actually dead; it is the
removal of essential organs which is the cause of their
death. This poses a huge dilemma for Muslims, and other
religions45 which share the same beliefs about death and
the taking of human life.
The purpose of Islamic law is to preserve life and mind
(intellect). Unfortunately, current deceased organ
donation practice challenges both of these purposes. The
concept of brain death as actual death makes no logical
sense while the process itself involves the taking of
human life. God Almighty says in the Qur’an: “And that
ye slay not the life which Allah hath made sacred, save in
the course of justice,”46 and “whosever kill a human being for other than manslaughter or corruption in the
earth, it shall be as if he had killed all mankind,”
A Muslim is also strictly forbidden to take his own life “And do not kill yourselves,”48.
By giving consent for “deceased” organ donation one is
also giving consent to have one’s life ended in the
operating theatre by the removal of one’s organs.
Organ Donation and Your Will
If you make a decision to donate your organs after death
then that is a bequest (gift after death) which effectively
becomes part of your Will from an Islamic perspective
Muslim scholars have debated whether or not it is
permissible for a Muslim to bequeath his organs on the
assumption that the organ donor is dead.
But in reality, because the donor is not actually dead, the
donor is gifting his life rather than just gifting his organs
While the transfer of property after death requires written
consent in the presence of two adult witnesses in English
law, the transfer of body organs requires no written
consent and no witnesses.
A New Protocol for End of Life Organ Donation
Current clinical practice of organ donation already
violates the dead donor rule34,50,51. So some medical
doctors and ethicists have advocated abandoning the dead
donor rule52,53,54.
The dead donor rule is a deontic constraint that
categorically prohibits causing death by organ removal.
Abandoning the dead donor rule would require informed
consent and it has the potential to increase the donor
pool. However, abandoning the dead donor rule
unlikely to find much support amongst Muslim scholars
and the Muslim public. The autonomy of the individual
in Islam is not unrestricted as it may be in some
societies, it is restricted by Islamic law55 and as such a
Muslim cannot choose to end his life.
The key question is: “How can organs be removed from
brain dead and other Muslim patients close to end of life
without ending their life in the process?”
Muslim patients on intensive care in whom a decision has
been made to withdraw life support treatment could
potentially donate one kidney and a lobe of liver
without losing their life in the process. Such patients
would be given a full general anaesthetic for the procedure, so the question of feeling pain or awareness is
removed, and after the surgery the patient would be brought back from the operating theatre to the intensive
care unit and, later on, life support treatment could be
removed as already planned, allowing the patient to die
naturally.
Advantages and Disadvantages of the New Proposed Protocol for End of Life Organ Donation
The perceived advantages of the new protocol include
1. Potential donors can be informed of the whole
truth about the organ donation procedure.
2. As it is a living organ donation it is likely to be
acceptable to all Muslim scholars.
3. Donors would be given a full general anaesthetic
as for an operation on a living person, so there is
no issue of perception of pain or awareness.
4. The protocol does not rely on declaration of
death so the issue of whether the donor is dead or
not is no longer relevant
5. There is potential to increase organ donation
rates.
6. The quality of the organs should be better than in
DCD protocol and as good as DBD protocol.
The perceived disadvantages of the new protocol
include:
1. Essential organs cannot be removed.
2. Details need to be worked out to see if it is
feasible and if it could be implemented in
practice.
3. As the patients are likely to be seriously ill there
is a risk of death during organ retrieval.
4. It is likely to be more complicated and costly.
Discussion and Conclusion
Under the new organ donation opt-out law, the UK
government deems every Muslim adult living in Britain
to have consented to donate his or her organs for
transplantation after being declared brain dead. However
survey2 carried out in 2019 by Agroni Research Ltd on
behalf of NHS BT showed that only 31% of adult
Muslims surveyed said that they support organ donation.
In 2020, over 50 Muslim scholars based in Britain
signed a statement opposing deceased organ donation.
The NHS commissioned fatwa by Butt released this year
before the opt-out law was rolled out did not yield the ruling hoped for. To presume (deem) consent in British Muslims is baseless and to impose it is morally
objectionable.
Since it is clear that brain dead individuals are not
actually dead22,24,59, removing essential organs from such
individuals is akin to active euthanasia, which is
explicitly forbidden in the Islamic Faith. Removal of
essential organs from a brain-dead Muslim could be seen
as a violation of religious beliefs. When family members
later find out the whole truth about deceased organ
donation, it could lead to a feeling of lifelong guilt
resentment.
Under the European Convention on Human Rights
(ECHR), Article 863-the right to respect private and
family life- would be violated where a person’s organs
are removed, after death, without consent having been
obtained during their lifetime64.
For all these reasons I believe that Muslims should be
exempted from the new opt-out organ donation law and
organ donation should only be undertaken with prior
expressed informed consent in place.
It is important that Muslim doctors and Muslim
scholars65,66discuss the subject openly with the aim of
providing the Muslim public sufficient information to
formulate an informed consent and ideally put forward
unified guidance on the issue.
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