The University of Bath, Seminar on Death and Dying
This is one of the first presentations I gave on Islam and organ donation. In it, I discuss some preliminary findings. The presentation was delivered at a seminar at the University of Bath, Centre for Death and Society in 2016.
The raw data for the results can be found here:
Thank you very much Tony and thank you everyone for attending. Today’s presentation is literally some thoughts and ruminations on a very small pilot study that I have conducted on organ donation and Cardiff Muslim’s attitude towards it.
When in December 2015, the Human Transplantation Act (Wales) 2013 became law in Wales, there was a panic in the Muslim community. Mosque pulpits were bubbling with fiery sermons urging the community to opt-out of organ donation immediately, lest they die and their organs are procured by force. As an imam in the community, people were contacting me through all the communication portals available nowadays. Some called to enquire whether Islamically/theologically it was permissible to donate organs, others asked that they would like to give their organs but were scared that they will be resurrected by God on the day of judgment organ-less. Some were worried that if they donated the organs, and the recipient committed sins with their organs, they will somehow be responsible for this for example in the case of a cornea transplant patient watching pornography. Others feared that their soul will feel the pain during the operation. So I thought that this will be good and timely research to do, one that will help Muslims understand issues better and also help stakeholders understand Muslim concerns.
The research included both qualitative and quantitative data collection, as well as in-depth study of Arabic, Urdu, and English primary and secondary materials on organ donation and Islamic bioethics. I conducted three interviews with Muslim scholars who are knowledgeable on issues related to bioethics, furthermore, I conducted two focus groups consisting of 10-15 people from Cardiff. The first focus group was with lay Muslims, by lay I mean those who are not religious scholars or medical professionals. The second focus group was with Muslim doctors. The quantitative part of the research was in the form of a questionnaire devised with the help of Bristol online survey and I just posted on my personal networks, within weeks I got 406 responses and decided to close the survey.
When I was preparing for this presentation, I wasn’t sure how to exactly pitch it. Should I just tell you about my findings, should I explain Islam’s position on organ donation …. I thought I’ll do all of this and also throw some sociology and anthropology in there. This then should give us some kind of common ground to start a discussion.
But before I go into discussing my actual data, I would like to preface my presentation with some brief excursions on the Shari’a and its law. Whereas Christianity is expressed mainly through its theology, Islam manifests itself primarily through the dictates of its law, at least in the dominant narrative in both the Muslim world and Western academia (this narrative now is gradually being challenged.)
The word Shari’a, which is another name for Islam, literally means a watering hole or the path to a watering hole. The imagery that is drawn here in the mind is that of a desert in the middle of which is an oasis where people and their livestock as well as wild animals gather to quench their thirst and be revitalized and reinvigorated. The simile that is at work here is that the shari’a is supposed to be a living system of organizing one’s every aspect of their life and one should turn to the shari’a for guidance on new emerging issues, and every time they turn to it they are replenished. Shari’a law is not the law in the conventional understanding of the word, it is broader, it not only regulates civil, transactional, and penal issues but has a say on even the most mundane of activities. So when one should clip their nails, or shave their armpits fall within the purview of the sharia. It encompasses personal, moral, and ethical issues.
The source of the shari’a although primarily is the Qur’an, but in reality, is the tradition of Muhammad and more importantly the working out of these sources by trained scholars.
The Qur’an is a book of just over six thousand verses. Out of these, only about 500 are related to law proper which includes about 80 issues covering personal, civil, and criminal law. Some issues such as the one under discussion have no precedence in the Qur’an, or the Prophet’s teaching or the scholarly writings of medieval scholars, for the very fact that the first instance of organ transplantation, in the form of extracting a thyroid gland and then replanting it back into the patient suffering from goiter only took place in 1883 and the first successful heart transplant was carried out by Christiaan Bernard in South Africa in 1967. The patient lived for 18 days and then died. So how and where do Muslims get their religious guidance on these new issues? The onus and responsibility lie with the scholars to work out answers to these issues from the Qur’an and the spirit of the Prophetic teaching, however, the application and concretion of abstract concepts found in the Qur’an such as dignity, rights, autonomy are heavily contested.
Islam places human life on a very high pedestal, the Qur’an reads, ‘we have honored the children of Adam’, in another place it reads, ‘whoever kills a single soul it as though he has killed all of humanity, and whoever saves a single soul it is as though he has saved all of humanity.’ By soul, the human is intended here. From the above two verses of the Qur’an, the idea of human dignity is extrapolated, and that nothing can violate this sense of human dignity. The crucial question for Islamic bioethics and organ donation research in particular is to interrogate whether organ donation and organ transplantation go against the Qur’anic understanding of human dignity.
The matter is further complicated by a saying of Muhammad who is reported to have said that ‘breaking the bones of the dead is like breaking the bones of the living.’ From this report of Muhammad, the principle of non-maleficence and non-mutilation is drawn out.
Muslims also believe that the human body is God’s property, it belongs to God, and humans are only given the body as an amanah (trust). Now what that means and how one reads amanah has a direct bearing on their attitude towards organ donation.
Arming ourselves with this preliminary knowledge, let’s jump to the data. What do Muslims make of the idea of presumed consent?
My data suggests a generally negative bias towards presumed consent. Out of the 406 respondents, 55% (n=222) said they knew what presumed consent was, 45% (n=180) said they didn’t know what it was.
When asked the question, ‘Do you believe presumed consent is ethical’ to those who knew what it is, 30% (n =66) said yes and 70% (155) said it’s not. Despite that, when asked whether they think presumed consent is a necessity, 38% (85) said yes and 62% (n = 137) said no. So we can see a sliding number here, from it being unethical, but yet it might be necessary and therefore that demands leniency in the law. When asked in the free text section as to why they believe presumed consent is right or wrong, 183 people responded, and their response can be summarized into two sentences. Those that believed it is ethical or necessary argue that there is a shortage of organs from Muslims and the BAME community. Those who argue against it seem to argue, surprisingly from a secular position that presumed consent goes against the autonomy of the individual. Some people might have not known the law or didn’t have the time to opt-out. Interestingly very few resort to religious arguments here.
My interview participants gave similar binary responses. One respondent said, I am my own person, why do I need to opt-out. Another said that exactly you have the option to opt-out and if you feel strongly against it then exercise your right and opt-out.
When I asked the Muslim doctors who I interviewed, they were naturally for it arguing that it’s not that people are against the idea of organ donation, its more to do with people not having had any thought about this. The presumed consent law forces people to think about it and if they felt strongly about it then they have the option to opt-out. When I further pressed them for an answer saying that is it not a violation of my autonomy as an individual that I am being forced to think about my own mortality when I could be enjoying an episode of Eastenders? One doctor responded, first by padding his response in ethical jargon, that we are trained to maintain patient autonomy, benevolence, non-maleficence justice, etc, however, the presumed consent does not impose on one’s autonomy, it just forces them to answer the question.
The religious scholars I interviewed were quite vocal against presumed consent. One argued that there is no data that suggests that presumed consent has actually contributed to an increase in the number of organs donated. He argues that at rock bottom the dispute is about who owns the body. Clearly, he sees presumed consent as an act of the State claiming the rights over the bodies of human beings.
One of my respondents said
So my qualitative data and quantitative data point to the understanding that a large majority of the Muslim population in and out of Wales see the issue of presumed consent problematic. What is interesting is that the argument put forward by my respondents against presumed consent is a secular one and not an Islamic one. Who owns the body? My respondents felt that presumed consent violates their autonomy and right over their bodies. It’s only the doctors who argued, again from a secular perspective, that presumed consent is not violating people’s autonomy, it’s just forcing them to answer the question.
So does this translate into Muslims being averse to organ donation? My data tells me otherwise.
We find in the quantitative data that 52% (n= 232) believe that it is Islamically permissible to donate organs by live donors, 7 % (n=30) believe it’s not permissible and 29% (n=119) didn’t know the answer from an Islamic point of view.
When I asked the question, ‘Do you believe it is Islamically permissible to procure organs from deceased donors (with his permission or the permission of family members) for the purpose of saving the lives of others?’ 51% (n= 205) said yes, 11% (n= 45) said no, 33% (131) said they don’t know.
A quick perusal of the data tells us that people are more cautious and less sure when it came to procuring organs from cadavers.
But still, a majority believed that it’s permissible, even though they believed that the body does not belong to them but to God (87% believed that it belonged to God and 2% didn’t).
Just to summarise, we have an interesting and unusual trend here, a high percentage of my respondents believe that the presumed consent is unethical and unnecessary because the state does not have the right over our bodies.
A high percentage of them believe that the body does not belong to them but to God, and yet a high percentage of them believe that despite the body not belonging to the individual they have the right to donate it.
At this point, I’m going to throw out some scattered thoughts and I’m not sure if it will work properly here, you can be the judge of that.
The eminent sociologist Bryan Turner in his book The Body and Society argues that people conceptualize the body in two ways: the first is through embodiment i.e. human beings have a body and possess a body, and secondly through enselvment that human beings are a body. The idea that humans have bodies is based on a Cartesian distinction between the soul/person and the body, which regards the body as simply a machine directed by the instructions of the soul. The body as a machine and therefore a conglomeration of disparate interchangeable body parts is a view quite compatible with organ transplantation and one generally advocated by certain groups such as doctors. However, studies have shown that the more integrated body parts are to the idea of personhood, the more sacred they are considered and less likely to be donated. The idea is in part based on how we view our ‘body image’ which may not necessarily have any relation to biological facticity but can be influenced by history, tradition, and custom.
How does all this fit with my data? Well first of all in Islam there is an intimate connection between the body and the soul. And the belief that both body and soul will be resurrected on judgment day, hence the anxiety about organ donation. Donating an organ, in this respect should be akin to donating a part of the person, and yet we find that a high percentage of my respondents are for organ donation. They are happy for their bodies belonging to God as opposed to the State, however, do not feel that God restricts their freedom to donate in any way. In other words, Muslims, at least a high percentage of my respondents view humans to be simultaneously involved in possessing and being, in embodying and enselving. If presumed consent is to work in the Muslim community, the rhetoric of the NHS must change from one that argues for organ donation as a necessity to one that makes the case that donating organs is within God’s wish and therefore it is an act of charity. Humanity lives on through this act of charity
Thank you very much.