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The biggest challenge facing those who have to grapple with bioethical issues is to find more sophisticated ways of involving the public in decision-making. There is a need to improve the supply of information, to make decision-making procedures more open and to make the bodies responsible for decisions more representative of society.
This was one message to emerge from a one-day conference, ‘Too hot to handle?’, organized in Paris last week by the British Council and Nature. The meeting, attended by leading scientists, legal experts and politicians, explored the similarities and differences between the French and British approaches to resolving bioethical issues, and considered how to reach international agreement on such matters.
Different historical and cultural traditions have resulted in France tending to legislate on matters that would usually be regulated in the United Kingdom through codes of conduct (see Nature 389, 661; 1997).
Another stark difference is that French thinking generally starts out by trying to balance the rights of the individual with those of society. Jean-François Mattei of the Hǒspital d'Enfants de la Timone in Marseilles, and a member of the French National Assembly, pointed out, for example that a ban on prenatal diagnosis of embryos was supported during parliamentary debate of France's 1994 bioethics legislation on the basis that, while it might represent progress for individuals, this was outweighed by the risk that it might become “systematic and collective”, and encourage eugenics.
Mattei, a leading architect of France's bioethics legislation, said that society had a responsibility to ensure that the brutal eugenics of the past is not replaced with “gentle medical eugenics” and the “elimination of those not meeting a genetic norm”.
But British speakers remarked that little is heard of the ‘individual-versus-society’ debate in the United Kingdom, where the rights of the individual and family are preeminent. David Porteous, from the Medical Research Council's Human Genetics Unit in Edinburgh, spoke for many when he argued that Britain considers that abuses can be adequately prevented by the “well-worked” democratic apparatus.
Almost all delegates, however, agreed that the days of debate on scientific advances affecting society being largely restricted to expert committees are numbered. “It is not science which will determine how genetics is applied,” asserted Porteous. He said that policy-making now demands a more sophisticated approach.
Derek Burke, chairman of the UK Advisory Committee on Novel Foods, agreed that it is “no longer sufficient for governments to take the advice of an expert committee and to expect the public to accept the conclusions without question”.
A succession of speakers reiterated that public confidence in policy will emerge only if the decision-making process is made more open. Pressure has grown for expert advisory committees to include consumer representatives, to make the minutes of their meetings public and to include minority viewpoints in their conclusions.
Trust is the key, said Tony Burton, deputy director of the UK Consumers’ Association, arguing that “consumers are perfectly capable of making informed choices about risk, provided all the conditions are there. The need is to create the conditions.” The European public is not against genetically modified organisms, he argued. “A minority are, but the majority are just confused.”
Burke, whose own committee has included consumer representatives for six years, agreed that consumers provide valuable input by bringing different “value systems” and perspectives to those of experts.
The creation of national bioethics committees represents a “revolutionary” leap in the process of democratizing decisionmaking, argued Nöelle Lenoir, a member of France's constitutional court and chair of the bioethics committees of the European Commission and the United Nations Educational, Scientific and Cultural Organization. She said that these differ radically from expert advisory committees and statutory regulatory bodies, such as the UK Human Fertilization and Embryo Authority, in that their members are chosen with the aim of creating a multicultural and multidisciplinary forum.
On such panels, scientists are confronted with philosophers, legal experts, physicians and theologians, reflecting the major faiths and main streams of thought in society.
But most delegates, including Lenoir, agreed that bioethics committees should not have a monopoly on ethical issues, and should promote public debate. Several speakers warned that bioethics committees should refrain from offering “solutions” to ethical problems but rather focus on clarifying the issues. “The deliberations of ethics committees are as important [as their conclusions],” said Lenoir.
But some speakers expressed reservations that bioethics committees are excessively élitist and not sufficiently representative of public opinion. There was concern that pressure on such committees to reach conclusions could force an unnatural consensus that masked dissenting opinions.
British speakers also displayed scepticism about such committees, preferring the UK system where a wide diversity of bodies make recommendations on ethical issues. Burke said he preferred the British “muddle” to the “pontification” of ethics committees, arguing that “dissent is essential”.
Lenoir, however, reckoned that bioethics committees are becoming the model of choice; eight member states of the European Union have created such committees, and two more have announced plans to do so. Jean-Yves Nau, medical correspondent of Le Monde, called for the French national bioethics committee meetings to be opened to the press and the public.
An edited version of the proceedings will appear onNature's web site.
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Butler, D. ‘Bioethics needs better input from public’. Nature 389, 775 (1997). https://doi.org/10.1038/39695
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DOI: https://doi.org/10.1038/39695