Donor organs are scarce, but should we use xenotransplantation and stem-cell technology to fill the gap? Martin Ince looks at efforts to help clarify the ethical complexities arising from scientific advances.
Jack Davies, 42, has three children and severe heart disease.
Without a heart transplant, doctors think he has only months to live. But no human hearts are available. Jack has the choice of being one of the first human recipients of a heart from a genetically modified pig. Doctors tell Jack that if he goes ahead with the transplant he is at risk of contracting retroviruses that might be transferred from the pig's heart to his body. But because the procedure is so new they cannot advise him on the risks involved. What they do say is that his family could be at risk as well.
Without the transplant Jack will die. But with it, his wife, Sylvia, and children (aged five, ten and 12) might be at risk from an unknown viral infection that could threaten their lives. What should he do?
This is the scenario painted in a science for public understanding course run by York University Science Education Group and the Nuffield Curriculum Centre. It is just one of a series of projects aimed at confronting the ethical complexities arising from scientific developments such as xenotransplantation. One of the newest is deliberative mapping, which the Policy Studies Institute, a London-based centre with an interest in a broad range of public policy issues, has championed as a way of bringing together experts and the public to push the debate forwards. Next week, Transparent Transplants, a public meeting supported by The Times Higher and organised by the PSI and the Science Museum's Dana Centre, will examine how the technique can help tackle the crisis in the number of organs available for transplant and how it can bridge the gap between animal-rights campaigners, who think it is unacceptable to use animals as "spare-part factories", and scientists involved in xenotransplantation research.
The debate is set against a backdrop of increased demand for transplantable organs, improved chances for transplant patients and a lack of organs available for operations. Figures from last March show that there were more than 6,000 people on the waiting list for an organ transplant and that more than 400 died while awaiting an operation in 2002-03.
Deliberative mapping is thought to be ideal for complex issues such as the transplant crisis in which there are a number of possible ways forwards.
The route requiring the least scientific innovation is to "harvest" organs more aggressively from human donors. In xenotransplantation, organs suitable for transplantation into humans might be grown in animals of another species. A third way might be the use of advances in stem-cell technology to grow human organs directly or to repair them in situ .
All these approaches involve building trust. For them to be adopted successfully, the public must trust scientists, medical practitioners and other experts. The public must be trusted to have valid opinions on complex issues so that innovation occurs by informed consent. The deliberative mapping process begins with the selection of participants. It is important to ensure that the specialists represent a full range of views. They are chosen with the help of a broad-based advisory panel. In the same way, the members of the public panel are chosen to provide socioeconomic and demographic variety and to ensure that they provide a range of perspectives, knowledge and opinions.
Unlike other techniques for bringing public and experts together, deliberative mapping does not aim to create consensus. Its intention, rather, is to make varied points of view apparent and clarify how they differ.
Transplantation was one of the first issues to be addressed by deliberative mapping. It was used in a North London project, completed in March 2003, which considered the "kidney gap" (lack of kidneys for transplant). The procedure involved 17 experts and 34 lay people. The specialists were from industry, including the medical equipment industry and a pharmaceutical company, from the world of policy, including the Department of Health, from healthcare and from medical and academic ethics. The worlds of medical research and animal welfare were also represented. Among the options were some that seem less than radical, such as improving existing transplant services, or reducing demand for kidneys by encouraging healthier living.
Others were more controversial. They included presumed consent, under which organs from patients would be available unless there was a positive reason to believe they were not, as well as xenotransplantation, the growth of organs from stem cells in the body or in vitro , and payment for transplantable organs. If there are too few volunteer donors, it might be worth seeing whether money works better than altruism to increase the numbers. Another approach was to accept the intractability of the problem and look at ways of coping with the deaths it would involve.
The panel found that the apparently soft options of encouraging healthier living and improving existing transplant services are indeed more attractive than the other choices. Encouraging altruism and its tougher cousin, presumed consent, are also popular. But the use of xenotransplants and of organs derived from embryonic stem cells were noticeably less well liked. Responses to the other options were less clear.
Malcolm Eames, senior research fellow at the PSI and one of the developers of deliberative mapping, said the deliberations showed that the technique could have a "potentially wider application". "It could be used in medicine or biotechnology, but might also have something to offer in areas such as sustainable development, the environment or innovation, where you have scientific and technological uncertainty alongside ethical and values considerations."
The Transparent Transplants debate, which Eames will chair, will extend the kidney issue to other organs. Speakers will include Marilyn Moore, coordinator of the Scottish Stem Cell Network, who was previously head of xenotransplantation research at PPL, the Scottish biotechnology firm that achieved world fame with the creation of Dolly, the first cloned sheep.
Researchers within the network are studying the use of stem cells to develop transplants that can help treat diabetes and neurodegenerative disease. Strong views on xenotransplantation are certain to be expressed by Joyce d'Silva, director of Compassion in World Farming, who points to severe ethical problems besetting the technology as well as its scope for bringing animal disease to humans.
She said: "An increasing focus of our work is in animal sentience. We are finding out more and more about the ways that animals think and feel. In this context, it is unlikely that any acceptable way of using them as spare-part factories will be found. Animals used to grow organs for humans would have to be kept in biosecure surroundings and would have their own immune systems suppressed. They would also feel pain and fear even before they were operated upon."
Another speaker will be Peter Doyle, a DoH senior medical officer with responsibility for transplant policy. The DoH has already established a UK Xenotransplantation Interim Regulatory Authority, chaired by Lord Habgood, former archbishop of York, to advise on developments in the field. In 2003, it published Saving Lives, Valuing Donors , which set out its approach to the problem over the next decade. It covers issues such as indirect payment for donors and paves the way for the controversial human tissue bill, being assessed by Parliament. The bill does not allow for presumed consent to be introduced into medical practice and has sparked anger among scientists who warn that it errs too much on the side of public consent and could harm research.
Both the shortage of organs for donation and the possible solutions that have been suggested raise severe ethical problems for the medical profession. They will be addressed at the meeting by Michael Wilks, chair of the British Medical Association's medical ethical committee. He said:
"Although 90 per cent of people say they would be willing to be donors after death, only 15 per cent carry donor cards and 50 per cent of relatives refuse consent for organs to be used. Intensive care is also becoming more successful, which reduces the supply of available organs. We would like more discussion of payment as an option, which raises strong emotions, and of the use of what we call 'non-heart-beating' donors, those who arrive dead at the hospital but who still have usable organs."
"Transparent Transplants" will be held at the Dana Centre in London on March 31, at 7pm. For tickets contact: firstname.lastname@example.org. For more information about deliberative mapping go to www.deliberative-mapping.org.