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Research News

Alberta Heritage Foundation For Medical Research





Following up:
Consulting the public on controversial issues

The value of public consultations on controversial new technologies is generally accepted, but it is difficult to consult with people on topics that few of us know anything about. This was the challenge facing University of Calgary professor Dr. Edna Einsiedel in 2000 when she developed a pilot consultation process on xenotransplantation.

Xenotransplantation is the transfer of living cells, tissues, or organs from one species to another—for example, the transplanting of a pig kidney into a human. The promise of xenotransplantation is a potentially unlimited supply of needed tissues, which could make transplant waiting lists a thing of the past. However, many people have serious medical concerns about the risk of transmitting viruses from animals to humans, as well as about the ethics of "engineering" animals solely to meet human needs.

The process that Dr. Einsiedel tailored for the xenotransplantation issue is called a citizen jury, a "deliberative" model of consultation in which individuals learn about an issue and discuss it before giving their opinions. In pilot projects in Calgary and Edmonton, citizens were recruited to juries. They received reading materials before attending a weekend-long forum. At the forum scientific, legal, and ethics experts representing a variety of viewpoints gave presentations and answered questions. Jurors then discussed the issue and reached a conclusion.

Thus flight-tested, the citizen-jury process went on to six other cities in 2001, serving as part of a nationwide public consultation initiated by Health Canada to help decide whether Canada should proceed with xenotransplantation. Dr. Einsiedel was a member of the public advisory group of the Canadian Public Health Association which led that consultation.

In their final report the group recommended that Canada should not proceed with xenotransplantation at that time. They reached the conclusion that not enough was known about the health risks of such transplants; that alternatives needed to be explored; and that the existing regulations and legislation governing xenotransplantation in Canada were inadequate.

The recommendation of the public advisory group was an important factor in determining Canada's cautious approach to xenotransplantation. Dr. Einsiedel notes that Canada, unlike the United States, still has not approved any clinical trials.

Using a format similar to the citizen jury, Dr. Einsiedel recently completed a consultation on plant molecular farming: the use of genetically modified plants to produce drugs and industrial products. The consultation assessed the interim regulations on molecular farming that have since become the official regulatory framework.

Dr. Einsiedel's work has strengthened her conviction that public consultations should play a role in the process of policy development.


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