By CRG staff - Interview with Sherine Hamdy

from GeneWatch 26-4 | Religion & Genetics
Aug-Oct 2013

Hamdy - Ottoman doctors

Sherine Hamdy, PhD, is Kutayba Alghanim Professor of Social Science and Assistant Professor of Anthropology at Brown University.

GeneWatch:Firstly, Islam is obviously a very diverse religion, so is it safe to assume there are equally diverse ideas about bioethics within Islam? In other words, is there actually such a thing as one "Muslim bioethics?"

Sherine Hamdy: That's an open question. There are two big competing narratives in the Muslim world: One is that Muslims should have their own bioethics, and mostly that would be gleaned from the Muslim jurists who issue fatwas in response to questions that people might ask about a specific medical procedure or technology. But the critique of that is: "Why are we just looking at legal scholars? Don't we have this much richer tradition that includes literature and ethics?" And just because of the post-colonial structures of many Muslim countries, it turns out that the Islamic legal voices are one of the ones that remain, to the detriment of other traditions. So that's one view, the "we have our own bioethics" view.

The other view is one that you get a lot from the lay public: "Don't we all have a common morality? Isn't medicine, in essence, universal - so shouldn't we have a bioethics that has developed in tandem with medicine?"

I think sometimes people trying to come up with this thing called "Muslim bioethics" are basically trying to add a Muslim flavor to what has already been developed as secular bioethics. Or you can define "Islamic bioethics" very differently, as saying we should go back to Medieval-era Islamic empires and see how doctors dealt with different ethical questions. But for the most part, I think it's inheriting a lot of secular bioethics and pushing it through this very mechanistic idea of Islamic law. And I, for one, find that unsatisfactory as a practicing Muslim. I have different standards for how I evaluate the ethical questions.

You've written on the idea of fatalism in the context of Islam. How does that play out in a medical setting?

For a lot of Western observers, Islam - not just Islam, other cultures too, but there's always been this idea that Muslims in particular are very fatalistic, and a lot of explanations of Muslim behaviors have been driven by this narrative of fatalism of Islam, because Muslims believe that God causes everything, God creates both evil and good, so everything that happens to a person throughout her lifetime is an act of God's will. One of the big conundrums of Islamic theology lies in the question of that area between God's will and human agency.

My critique of framing Muslim responses to bioethics in terms of these longstanding theological questions about human's free will vs. God's omnipotence is that sometimes we are misrecognizing questions about inequality as fatalism. You might find even Muslim majority countries internalizing that view: That Muslim people are fatalistic, and that's why they won't come in for their follow-up treatment, or that's why they don't take the necessary precautions. What they're not looking at is whether people have access to trustworthy and quality healthcare, and why poor people in particular would be distrustful of medical intervention because of past negative experiences with it. Those structural questions about access to good quality care are often covered over by this narrative of fatalism.

Can you say a little bit about the role of fatwas?

A fatwa is, by definition, a response to a question. In the Sunni Muslim world, those are nonbinding opinions, more like advice to the person asking the question. At least in Egypt - where I've done most of my research - with the advent of modern nation states, there's this tension where the political rulers want control over the people who are issuing fatwas, but people will only trust the religious authorities issuing fatwas if they are seen to be separate from political manipulation. So there's always a tension there.

What are the implications for somebody who doesn't follow a fatwa?

It depends. For example, with organ transplantation, which is studied a lot, the legislators in Egypt were debating for a long time: "Are we going to allow the harvesting of organs from patients who aren't really dead, who are in this state between life and death? We'd have to redefine 'death' the way European and American countries did in order to allow for the harvesting of organs." There was a lot of unease with it, and none of the legislators wanted to do it because they were uneasy with it, ethically. They got the state appointed muftis to say, "No, it's OK, because the physicians say it's OK," but that wasn't enough to qualm everyone's fears.

Often in bioethics, if the fatwa is saying "no" to something that the state wants to do, they will encourage the mufti to change it in line with the state's aims. But if the fatwa says "yes," that isn't necessarily in itself enough to convince people to follow it. To give another example, with in vitro fertilization, the state-appointed muftis in Egypt said it's OK as long as the gametes come from the husband and wife, but there can't be third party donations. So the consequence is that doctors don't want to open a clinic in Egypt that will have third party donations. And that is different in different countries - in Iran and Lebanon, for example, the Shi'a muftis did allow third party donations.

How is it different for Muslims in the West, in countries that aren't Muslim majority?

There has been a lot of interest among Muslim minorities in Western countries who are wondering "is this sort of procedure OK according to my beliefs?" Whereas, in my experience, I've seen Muslim patients in Muslim majority countries kind of conflating the medical and moral authority of the physician. So they trust that the physician wouldn't offer a procedure that wouldn't be in accordance with their beliefs.

Another big difference is people's access to medical technologies. We can see this, for example, with prenatal genetic screening in the U.S., which has become widely available for pregnant women who are identified as high risk, despite the high cost. In Egypt, usually it's only after a person has already had a child with a significant genetic disease that prenatal genetic screening is offered to the patient.

Is that because the parents don't think about getting prenatal testing beforehand, or because the doctors don't think about it?

Both. Part of that is just about resources, part of it is about awareness, and about access.

For example, where an expectant mother has been diagnosed with carrying a child with a defect or disease, and she's struggling with that decision about whether to terminate the pregnancy or carry on -  in almost all the cases I saw, those women already had an affected child in the family. The question was "can I have another one?" It wasn't "can I have a life as the mother of a disabled child?"

I think in some cases that influenced how they came to think of religious ethics in whether they could terminate the pregnancy, because they would think something like, "God knows that I've already done so much for my disabled child," or "God knows that I might not be able to continue caring for my disabled child if I have another one." So it would play a role in making that decision, in alleviating the guilt.

Before we go, I have one other really interesting story.

In Israel, in the Negev region, there are Bedouins who have been displaced by the Israeli nation state, and they live in a lot of poverty. Because of their displacement from the land, there's a smaller gene pool from which to marry, so they had really high rates of some genetic diseases. The Israeli medical hospital is the one who sees these patients, and one of the Israeli geneticists said, "We should go to that community and screen them, and tell the people who are heterozygous not to marry each other." So they did that, under questionable circumstances. But what happened was when women were told that they carried a defective gene, they were being ostracized and became unmarryable. And the men, for the first time, broke with tradition and married outside the group. Then they would come back and sometimes take those women who were unmarryable before as second or third wives. So it really reduced the status of those women, and it didn't reduce the burden of the disease. And it led to a lot of further distrust between the community and the medical establishment.

So in summary, it's not just what religion people belong to, but also their socio-economic status, the amount of power they have over their lives and their reproduction, their resources, and what their past experiences and understandings of medical intervention have been that factor into ethical decision-making.

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