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[integer@www.god-emil.dk]

DECLAN BUTLER [1997]

A stunt show in which a 'flying dwarf' had been projected from a cannon was recently shut down in France on
the grounds that it contravened 'human dignity', a ruling which might well bewilder other nationalities,
Anglo-Saxons in particular. (An appeal by the dwarf to the European Court of Justice, on the basis that the
decision infringed his 'dignity' to work, was thrown out on technical grounds).

In the same way, France's abstract approach to bioethics, relying on a battery of laws peppered with references
to universal principles such as 'human dignity' and 'human rights', often baffles observers from countries,
including the United States, with little or no bioethics legislation. Indeed, the French philosophy on bioethics
is sharply opposed to the 'pragmatic' approach found in both the United States and the United Kingdom,
which tends to address specific bioethical problems in an ad-hoc fashion.

Nowhere has this difference in philosophy been seen more clearly than in the exchanges over the ethics of
cloning. Arguments by Axel Kahn, a
member of the French national bioethics committee, that cloning is an affront to human dignity have been
dismissed as "rhetoric" by two leading British bioethicists.

David Shapiro, former executive director of the UK Nuffield Foundation on Bioethics, says that the debate
should focus on whether cloning is ethical in tangible cases, such as in men unable to reproduce sexually. But
Kahn says that such arguments are typical of the "utilitarian" approach endemic in Britain and other
Anglo-Saxon countries, which reduces ethical problems to an "algebraic equation of the pros and cons" of a
particular situation. "If the pros exceed the cons, then it is judged ethically acceptable," says Kahn.

The Anglo-Saxon tendency is to rely on professional codes of conduct as the main means of regulation (see
page 663). In contrast, France has invented a highly institutionalized system for regulating biomedical progress
that reflects the philosophy by which it is legitimized.

Indeed, as far as government action is concerned, France has been in the avant-garde of the bioethics movement. In 1983, for example, it became the first
country to create a national bioethics committee, and the world's first comprehensive bioethics legislation was introduced a decade later.

International influence
Similarly, France has had a major influence in the drafting of the Council of Europe's Convention on Human Rights and Biomedicine, and the proposed
'universal declaration on the human genome and human rights', due to be approved later this year by the United Nations Educational, Scientific and
Cultural Organization (Unesco).

N?elle Lenoir, a member of the French constitutional court, who played a major role in shaping the
country's bioethics legislation, is chairwoman of Unesco's International Bioethics Commission, and
of the European Commission's bioethics advisory group. The content of the declaration has a
twofold purpose. It protects the rights and liberties of individuals, and also enshrines the role of
science and knowledge in helping civilization to progress.

In France itself, this approach has led to laws banning eugenics, germline gene therapy, genetic
testing (except for research, medical or judicial purposes), and patenting of parts of the human body.
Other legislation restricts in vitro fertilization to living, sterile couples "of reproductive age," and
rules that organs cannot be transplanted without the informed consent, from donors, or next of kin,
if the donor is dead. Clinical trials and genetic research are also regulated by law.

There is also a sharp contrast between the French tradition of legislating through detailed written
codes spelling out every last prohibition and exception ? as in other Roman law countries ? and
the Anglo-Saxon tradition of common law based on cases and jurisprudence.

In practice, however, similar factors come into play and, apart from a few major divergences, the
end result is frequently the same. Jean-Fran?is Mattei, a member of the French parliament and one
of the main architects of the country's bioethics legislation, says: "The United Kingdom starts out
from the situation and goes towards the principles; we start out from the principles and go towards
the reality. Obviously we often meet midway."

Ban on embryo research
One clear area of divergence is in the legal attitude to human embryo research. To meet pressure for
such research, the United Kingdom invented the term 'pre-embryo' for a embryo less than 14 days old ? passing legislation in 1990 that allows research
on embryos up to that point. French law, in contrast, currently only permits research on a human embryo that does not
harm its 'integrity', which in practice puts a ban on embryo research.

As in Britain, the French position is based partly on opposition from groups who argue that life begins at fertilization. In addition, however, the French
psyche soundly rejects a utilitarian view of human embryos. If embryo research were ever to be authorized, it is likely to be only for strictly limited
purposes ? and probably limited to 'surplus' embryos, which parents had decided no longer to conserve.

Many in France support such laws as representing a 'principled' position. But one disadvantage of France's voluminous legislation is that it has put a
bureaucratic burden on research agencies. The Centre National de la Recherche Scientifique (CNRS), for example, has had to set up a special unit to help
researchers meet legal requirements.

Law ignored
This creates its own tensions. Given the paperwork and delays in obtaining approval for even the most straightforward genetic research involving human
subjects, many researchers simply ignore parts of the law. "Sometimes you need to go through six commissions before starting a genetic protocol,"
complains one CNRS official. "The urgent need is to simplify the law."

The CNRS is indeed discussing with the government how such concerns should be taken into account during the scheduled revision of the bioethics laws
in 1999, an opportunity which some researchers are likely to use to press for an easing of the ban on human embryo research.

Pressure for change is coming in particular from those keen to work on the therapeutic opportunities opened up by progress in cloning and the creation of
embryonic stem cell technologies, both of which require research on human embryos. Such advances are "changing the debate," says one member of the
national bioethics committee.

The bioethics legislation presented to the National Assembly under the Socialist government in 1993, which would have allowed embryo research under
controlled conditions, was dropped by the conservative government that came to power later the same year. But the new Socialist government is likely to
be more sympathetic to researchers.

The national bioethics committee has already recommended that human embryo research be allowed for the production of embryonic stem cells. One member of the committee goes further, arguing that it is "hypocritical" for France to ban embryo research while making
use of research in medically assisted procreation techniques carried out elsewhere.

But it is telling that in France, with its 'closed' technocratic tradition of decision-making, such dissent is rarely aired publicly. Many within the research
organizations oppose the ban on embryo research, for example. But negotiations usually take place directly between officials from the research agencies
and the ministries; most of the public is left in the dark.

Another constraint on debate is the high degree of centralization in France. In Britain and the United States, a plethora of bodies makes recommendations
to the government, professionals and the public; in France, discussion of ethical issues is dominated by the national bioethics committee.

The French President nominates the chair of the committee, as well as five representatives of the major faiths and philosophies. The remaining members
are from diverse backgrounds, with almost half being scientific researchers, appointed in a personal capacity on the basis of their experience.

The centralized French system has the benefit of "clarity," says Shapiro, with less "noise". But it also results in less public debate than in the United
Kingdom. Indeed, while France's national bioethics committee is widely praised for the scientific quality of its reports, many are concerned that it is
dominating debate, and being used as a source of ready-made solutions, instead of as a forum for promoting public debate. Kahn, for example, a member of the committee, says he "regrets" that the public and politicians sometimes "have a tendency" to consider the
committee as "priests" possessing absolute truth.

Jean-Pierre Changeux, the committee chairman, defends its role, saying that its 'opinions' are widely discussed in the press. He also points out that the
committee's opinions are only consultative, and that it is ultimately parliament that debates and decides. Mattei also defends the committee's work,
arguing that "politicians need an intermediate body between the government and public opinion; the committee gives the reflections of 40 people who
have the required qualities".

But Changeux agrees that there is a pressing need for wider public and political debate of the committee's opinions. Reinforcing the National Assembly's
structures for providing parliamentarians with scientific advice would be an important step in this direction, he says.





















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