ORGAN DONATION PRESUMED/ DEEMED CONSENT

The demand for organ donation outstrips the supply of organs for transplntation. This is a worldwide problem. In the UK this is even more of a problem for the Asian community who make-up about 5% of the population. The Asians are over-represented (17%) on the organ transplantation waiting list and under-represented (3%) on the organ donation register. 4% of all deceased organ donors are Asian while 13% of all deceased organ transplants are Asian. These figures clearly demonstrate the need for Asians, the majority of which are Muslims, to donate their organs.

The passing of the Organ Donation (Deemed Consent) Act, 2019, in England, saw the introduction of the new opt-out organ donation law in the U.K. (Wales 2015, England 2020 and Scotland 2021), as explained by Dr. Dale Gardiner in this video. This new organ donation (deemed consent) law means that in England all adults (above the age of 18 years)  are considered to have agreed to donate their organs upon death unless they have recorded a decision not to donate or are in one of the excluded groups. The terminology used for this kind of law can vary in different jurisdictions from deemed consent to deemed authorisation to presumed consent and is often referred to as an opt-out system. This new opt-out law in England is seen as a potential solution to the shortage of organs for transplantation by trying to increase organ donation rates. But a number of researchers and commentators have stated that opt-out systems are no guarantee of increased organ donation rates.

The central point in the Organ Donation (Deemed Consent) law is that expressed consent is not required. The justification of changing the law to an opt-out system is based on the government figures (mentioned in explanatory notes to the Organ Donation (Deemed Consent) Act 2019, para 5) that around 80% of the U.K. public support organ donation. It is argued that the new deemed consent law will bring this reality in line with public opinion. However, it is difficult to find the source of this statistic of 80% public support. The figure of 80% support is very much dependednt on the question in the survey and the public are not made aware of the whole process of organ donation. A more important point of note is that general support for organ donation does not equate with support for deemed consent for organ donation. Presumed consent is based on the presumption that if an individual or a group were asked if he or she or they wish to donate their organs after death there is a high probability that they would say, “Yes.” There is no doubt that the majority of the UK public as a whole supports organ donation in general but it can also be said that the majority of UK Muslims if asked whether or not they would like to donate their organs after death they would say, “No.” In a survey carried out in 2019 by Agroni Research Ltd on behalf of NHS BT only 31% of adult Muslims surveyed said that they support organ donation.  The organ donation deemed consent law nfringes on the fundamental human right
of individuals to autonomously decide what happens with their bodies.One important question that arises for ethnic minority groups such as the UK Muslim community is, “Is it ethical to presume consent or deem consent for organ donation when there is no evidence to support such an assertion in a particular sub-group such as the UK Muslim community?” 

In the government public consultation, only 25% of respondents felt that the family should make the final decision in the absence of a recorded objection, these were mainly Muslim and Jewish respondents. However, on this occasion, it seems that the minority opinion prevailed. So those Muslims who are particularly worried about the possible implications of the new Organ Donation (Deemed Consent) law, can take comfort that no organs will be retrieved without consulting the family of the deceased or in their absence a close friend (in a qualifying relationship) to check if they can ‘provide information that would lead a reasonable person to conclude that the person concerned would not have consented’. If it is not possible to speak with those in qualifying relationships to the deceased, then the guidelines state that donation should not proceed on the basis that it risks undermining public confidence which might outweigh the benefits of donation.

It is important for Muslims to note that the ECFR fatwa 2/6 (2000) recognised a deemed consent to be permissible for a Shariah persepctive.

The other, perhaps a more important, presumption that has to be made for UK Muslims to donate their organs after death is that brainstem death equates with Islamic death. Again this presumption lacks evidence as well as popular support from Muslim scholars. Three out of the four legal edicts (fataawa) which have been issued by Islamic scholars aimed at the UK Muslim community do not equate brainstem death with Islamic death (meaning that the soul has departed from the body causing death). This is another inconvenient truth which some Muslims who support organ donation in principle have to grapple with. Of course, telling potential donors that they may not be Islamically dead when their organs are being removed may lead to refusal to sign up for organ donation, hence, such details are often omitted when trying to recruit Muslim organ donors. This poses a further question of whether providing selective information to promote organ donation is ethical. Whether or not brain dead patients are Islamically dead or not is what complicates the debate on organ donation in Islam as Dr. Aasim Padela explains. This has also been a source of confusion amongst many Muslims, including those involved with promoting organ donation for the NHS, in understanding Mufti Zubair Butts fatwa on organ donation. Many think that his fatawa gives the green light for organ donation for UK Sunni Muslims. Unfortunately, this is not true. In reality, Mufti Zubair Butt’s fatwa states that there is room for permissibility for deceased organ donation within Islam but the donor must be Islamically dead, and he does not consider donors (both donation after brain death, DBD, nor donation after circulatory death, DCD) to be dead. So in practice, his fatwa considers solid organ donation, as practised in the NHS, not to be permissible, as he explains in this  Youtube video, @ 19min 55s for DCD and @ 20min 36s for DBD. Mufti Zubair Butt discusses how selective information has been provided to UK Muslims in the past on the issue of organ donation. The question is not whether organ donation is  permissible in Islam or not but more importantly, "Is it permissible to remove organs from someone declared brain dead but is not Islamically dead?" Should the Muslim public be informed of these kinds of details and facts when it is likely to lead to refusal to donate organs? The consequences of refusal to donate would lead to the death of individuals on the organ transplant waiting list. On average 3 people die daily in the U.K. waiting for an organ transplant. Is there not an ethical community obligation to try to improve this situation?

If the Muslim scholars (and others) do not consider brainstem death yet consider it permissible to remove organs from a brain dead patient  then the Dead Donor Rule, which has been at the centre of the bioethics debate on organ donation, would be violated. It would mean that the cause of death would be the retrieval of the essential organs. It is interesting to note the wording of the 1995 Fatwa by the Muslim law Council, which the NHS has used to promote organ donation amongst the local Muslim population, stated "brainstem death as constituting the end of life for the purpose of organ transplant". Unfortunately, this 1995 fatwa did provide any details on how this decision was reached and whether brainstem death was being accepted as legal death just for the purposes of transplantation only and not other death-related activities which come into play such as inheritance and waiting period (idda). This failure to provide details of the discussions which took place and the failure to involve all the major Muslim schools of thought as well as the lack of details of the expertise of all those involved in the decision making meant that the majority of the UK Muslims did not connect nor did they act on this fatwa despite all the efforts made to promote it.  

Some experts in North America feel that the Dead Donor Rule is already being violated with reference to the wording of the Uniform Determination of Death Act (1981) which requires either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, to declare death. These criteria are not achieved in DBD (donation after brain death) nor in DCD (donation after circulatory death). 

These are difficult ethical issues. As Professor Arthur Caplan explains organ donation relies on the public trusting the doctors and other healthcare professionals involved in organ donation and transplantation. Such individuals have to face ethical dilemmas as to how to present all the information in a balanced manner to the public while trying to achieve a desired goal and maintaining trust. Failing to maintain a balance and trust could mean a backlash in the future.

Dr. A. Hussain, Sep. 2021

Useful links

Opt-out Organ donation law FAQs

Does Brainstem death equate with actual death?