IN developed countries, the idea that individuals matter more than families and communities lies at the heart of our understanding of bioethics. It is enshrined in laws and conventions all the way to the UN, and means that any citizen can, without having to give reasons, refuse to participate in, say, a clinical trial, regardless of how important the trial may be. It also makes it unlikely that governments will pass laws to make donor cards compulsory, even when donor organs are scarce.
In many developing countries, the same framework applies, with laws often based on western models. But these are laws in name only. In the real world, the wishes of individuals – particularly younger adults – can be overridden by families and communities. Then, third-party professionals, such as doctors or social workers, have to step in to ensure their voices are heard. This is one of many important strands in Bioethics and Organ Transplantation in a Muslim Society, a moving fly-on-the-wall account of life inside Pakistan’s largest public-sector renal transplant hospital in Karachi, a mega-city of 10 million people. Its Pakistan-born author, Farhat Moazam, is a surgeon-turned-ethnographer. She trained in the US, but a desire to give something back to Pakistan sees her return to the city of her childhood to find out what it is like if you are poor and need emergency surgery.
There is plenty to discover. One of the biggest problems is the worldwide shortage of kidneys, exacerbated by the fact that, alone in the Islamic world, Pakistan insists that only the living can donate. Taking organs from the dead or dying is banned under a narrow understanding of Islamic tradition that considers humans to be accountable to God for their actions and deeds, even for their organs being in the place where they started. Transplanting organs from body to body is seen as interfering with that.
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The fact that organ donation is limited this way means that waiting lists are lengthy. Preference is given to relatives as donors to reduce the risk of organs being obtained illegally. In 1999, Moazam reports, some 10,000 Pakistanis needed a kidney transplant. With just 725 operations that year, the pressure on institutions such as the Karachi hospital brings them close to breaking point. Hundreds of new patients and their families come knocking on its doors, desperate to make use of its finite dialysis facilities. These are the city’s poorest who have travelled for days, sometimes on foot, and who have to wait outside to be seen. Often, they have nowhere else to stay, and are fed by staff.
The hospital’s dilemma is that if donors cannot be found for existing dialysis patients, beds cannot be freed for those who are waiting. Many are at end-stage renal failure: without dialysis or a transplant they will die. The hospital needs to be creative in the search for donors, while protecting those most at risk. For example, staff take it upon themselves to search patients’ families for donors, interview them, and sometimes press them hard to donate. Equally, if vulnerable people, such as young single women, are offered by families as donors, staff will veto them unless they are sure that no coercion has been involved.
Throughout the book, Moazam compares the ethics of life in Karachi with her experience in the US, where donors are given every right to refuse through consent forms and counselling. While Pakistani donors are also required to sign consent forms and undergo much pre-transplant counselling, she reports a member of the hospital staff commenting that the formality of the consent form is not unlike some forms of forced marriage: it is assumed the candidate will agree, so why bother asking for their permission?
“It is assumed donors will agree, so why ask their permission?â€
This stylishly written book is much more than an account of comparative medical ethics. It is an insider’s story of how modern medicine can be made to work successfully in traditional societies where the demands of religion and extended families are central. It also details the daily struggle for survival in a mega-city, and shows what happens when successive governments fail to provide basic housing and healthcare for their poorest.
Bioethics and Organ Transplantation in a Muslim Society
Indiana University Press