Public to get another say on xenotransplantation

The National Health and Medical Research Council has kicked off a second round of public comment on its draft guidelines for xenotransplantation research, and will run a series of community consultation meetings in capital cities in February.

Xenotransplantation -- the therapeutic transplantation of 'humanised' animal cells, tissues or organs into humans -- is seen as one way of remedying Australia's chronic undersupply of donor organs for seriously ill patients waiting patients awaiting heart, lung, liver and kidney transplants.

In a statement, the NHMRC said overwhelming demand for viable and suitable organs, together with recent advances in gene therapy and gene technology, threw the research spotlight on xenotransplantation.

The NHMRC working party held its first round of public meetings to canvass community opinion on the controversial topic in 2002.

Dr Jack Sparrow, who came out of retirement to take over as head of the working party after the first round, said the research and its potential applications were "complex, and raise many ethical concerns".

Sparrow said that despite high levels of funding for organ-donation programs, and extensive publicity to encourage people to become organ donors, there had been virtually no increase in Australia's chronically low donation rate. "The demand for donor organs is increasing," he said. "In 2001, only 801 organ donations were available to a total of 1955 Australians awaiting transplants for the treatment of conditions such as heart disease or kidney failure."

Australia's remarkable success in reducing its road toll, combined with improvements in neurosurgery and intensive care, were partly responsible, but for reasons that were unclear, the percentage of Australians willing to donate their organs in the event of their accidental or premature death was much lower than in the US and most European nations.

The NHMRC's working party on xenotransplantation is charged, among other things representing community wishes on whether research should go ahead. Sparrow said it was important for the general community, as well as the science and medical communities, to be fully informed and involved in the debate, to set the path for Australian research in xenotransplantation.

Asked whether the there was a risk of the community-consultation being captured by highly organised groups opposed to the controversial technology, resulting in needlessly restrictive guidelines on research, Sparrow said, "I don't think you can do it any other way. I don't think the NHMRC can say we should just forego such a process."

He said that, in addition to verbal presentations -- some of them "extremely eloquent" -- the first round had received 97 written submissions, most from groups with concerns about animal welfare, the safety of the technique, or the ethics of inter-species transplants.

As a result, a second animal-welfare representative was added to the working party, along with several specialist clinicians in infectious diseases. The group originally comprised representatives from scientific and medical research organisations, transplant services, animal welfare groups and community and support groups.

Sparrow said the working party already had a sub-committee that dealt "in considerable depth" with animal welfare issues, but because of the number of first-round submissions on this issue, it accepted that it had not been given sufficient attention.

Political correctness?

The increasing influence of anti-technology activist groups in community affairs and politics has seen a trend for governments to establish public forums to canvass community views on controversial issues involving science and technology.

Critics in the scientific community, politics and the media have criticised such forums as exercises in political correctness. They worry about them being subverted by highly organised groups opposed to new technologies, and that the political response will be to impose strict guidelines on research.

Before last year's round of community consultation on genetically modified crops in the UK, organiser Prof Malcolm Grant described such consultation as "a unique experiment to find out what ordinary people think once they've heard all the argument".

But in Britain, where the "mad cow disease" episode and foot-and-mouth disease epidemic have heightened consumer anxiety about food safety, the six public hearings became little more than serial diatribes against GM agriculture. Some scientists and media dismissed the hearings as fruitless, even farcical.

Mark Henderson, science correspondent for The Times, said the meetings had been "dominated by anti-technology zealots -- the only faction that was sufficiently well organised and cared enough about the issue to attend".

Henderson wrote, "This exercise has been farce from beginning to finish. I'm not sure I want the man in the street to set Britain's science, technology and agriculture policy. One of the six meetings spend much of its time discussing whether the SARS virus came from [GM] cotton in China. It's more likely to have come from outer space."

In the US, the National Science Foundation has been funding a series of 'citizenry technology forums' on science and technology policy. The first forum, on agricultural biotechnology, recommended that the government tighten regulations on growing GM crops.

Writing in the San Diego Union-Tribune, Henry Miller, of the Hoover Institutute, and founding director of the Office of Biotechnology at the US Food and Drug Administration, said: "They got it wrong. Their proposals are unwarranted, inappropriate and contrary to the recommendations of experts, including those within the government and in the scientific community.

"Science is not democratic. The citizenry does not get to vote on whether a whale is a mammal or a fish or on the temperature at which water boils. Legislatures cannot repeal laws of nature.

"We should be wary of attempts to sample public opinion as a prelude to setting public policy on highly technical subjects."

Sparrow said it was simply not feasible to achieve complete, universal support for controversial new technologies. "For some people, it doesn't matter how minuscule the risks are, and how overwhelmingly strong the arguments, they just won't move," he said.

"It's hardly surprising the working party doesn't have unanimous views on these issues."

Sparrow said he had been involved in talkback-radio interviews on xenotransplantation, and had found that it was "often too technical an issue for the standard grab. He said he had been distressed by a tabloid newspaper headline which read "Top medical agency backs pig transplants".

"The NHMRC is not committed to xenotransplantation -- it remains open-minded," he said. "I've been trying to make the point that the first research proposals that will come forward are likely to be at the cellular and tissue level -- we're some considerable time away from organ transplants, and advances in stem-cell therapy may intervene before we move into xenotransplantation."