YOU MAY remember the story of Baby Fae. She was the newborn who received an emergency heart transplant in 1984. What made the operation memorable was that the heart used was a baboon’s. The procedure turned out as most highly experimental surgeries do; the baby died 20 days later. Still, some would say it was better than doing nothing. The baby was going to die anyway, it was a heroic attempt to save life, or at least prolong it until a human heart was available.
Others take quite a different approach, seeing the surgery as little more than an experiment on a dying child, too poorly grounded in science to have any reasonable hope of success. For some, the very idea of xenotransplantation, the use of non-human organs for transplant into humans, is unacceptable.
The reasons may be difficult to articulate. Call it the “yuck” factor, a pre-rational sense of repulsion that may be quite strong. The question is, how seriously do you take such responses? Clearly you can’t use them as the basis for public policy, but perhaps they are not entirely irrelevant.
This question came to the fore in a recent consultation organized by Health Canada. Three key developments have led some researchers to look again at the possibility of xeno-transplantation, not using baboon organs this time, but using pig organs and tissues. The key factors are: 1) the shortage of organs from human donors; 2) improvements in our ability to control the rejection of organs by the body’s immune system; and 3) the increased ability to genetically modify and then clone pigs that would be less likely to trigger rejection by the patient’s body.
Clinical trials are now taking place in the United States, and it is only a matter of time before Health Canada receives a request for similar trials. Faced with that possibility, and recognizing that the general public may have many concerns, Health Canada organized a meeting in April that brought together representatives from a range of organizations to talk about how to consult the Canadian public. I went on behalf of the Canadian Council of Churches.
What are the concerns? Obviously there are practical questions of safety. There are risks associated with organ rejection and the use of immunosuppressive drugs.
There is also the risk that a patient could become infected with an animal disease transmitted through the transplanted organ or tissue. This risk affects not only the patient but those around the patient who might also become infected. There have been a number of examples of viruses being transmitted from animals to humans and causing disease, the best known being so-called “mad cow disease” in Britain, and HIV. All these risks would have to be addressed to ensure the safety of any procedure, even at the experimental phase.
There are also questions about the appropriate use of animals. We already kill animals for food, and it may seem no different to kill them for an organ. However, to prevent disease transmission it may be necessary to keep the animals isolated under conditions that many would consider unacceptably cruel.
There are also questions of justice. Using animal organs as an alternative where the supply of human organs is too low could create a two-tier system where some people will get access to human organs, but others are eligible only for animal organs.
And what about that “yuck” factor? Actually it may have some basis. Even in a conventional transplant the barrier between self and non-self is challenged and patients often report a sense that their identity has been violated. The assault on the patient’s sense of identity may be far worse if they have received an animal organ. What is at stake here is not the safety of a procedure but its implications for a person’s sense of meaning, of who they are and how they relate to the world around them.
Such concerns are real, and to address them, a consultation process needs to understand the way in which people shape the meaning of their lives and relationships. It is not enough to gather the experts to sift through the facts and tell us that our fears are baseless. What we need is the sort of consultation that takes peoples’ concerns seriously as the starting point of discussion. In a survey conducted for Health Canada, 74% of Canadians said they were aware of xenotransplantation.
We need to reshape the way we undertake consultation so experts are used to empower public participation rather than limit it. We need to start with the assumption that public concerns are real if inarticulate. The task is not to dismiss concerns, but to help articulate them so their real significance can be assessed.
Our reaction to a new technology often reflects concern not simply about safety, but about what it means to be human, and about the cultural values implicit in our relationships with each other and to the world around us. Experts have no unique authority in answering such questions, they belong to all of us.
In April, I saw Health Canada officials trying to articulate a strategy for consultation that takes these concerns seriously. If it succeeds it will mark a welcome shift in government practices around public consultation. Canon Eric Beresford is the Anglican Church of Canada’s co-ordinator of ethics and interfaith relations.
