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Debating ethics and public policy: the Nuffield Council on
Bioethics |
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| Tor Lezemore |
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Trends in Genetics 2002, 18:653-655 |
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Concerns
about bioethical issues raised by scientific developments in
genetics are a common feature of both public and policy
debates in the UK. This article sets out how one such body,
the Nuffield Council on Bioethics, contributes to public and
policy debates, and provides information about similar bodies
in the UK and around the world.
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The pace of scientific
developments in genetics and biotechnology is causing major
concerns about the ethics surrounding both the research and
its potential applications and consequences. There are
numerous bodies that contribute to both public and policy
debates concerning these issues, and new committees and
organizations are established with considerable frequency. In
the UK, advice about and regulation of ethical issues posed by
advances in genetics is provided by a wide range of bodies
such as the Human Genetics Commission, the Agriculture and
Environment Biotechnology Commission, the Human Fertilization
and Embryology Authority, the Gene Therapy Advisory Committee,
and the House of Lords and House of Commons Science and
Technology committees; patient and consumer organizations such
as the Genetic Interest Group, Human Genetics Alert, GeneWatch
and the Consumers' Association; and by bodies such as the
Royal Society and the Nuffield Council on Bioethics (
Box 1). Further afield, many countries have national
bioethics commissions, generally established by the
government, which play an advisory role ( Box
2). The roles, remits and objectives of these various
bodies differ. This article sets out how one such organization
in the UK, the Nuffield Council on Bioethics, contributes to
public and policy debates.
The Nuffield Council on Bioethics was established by the
Trustees of the Nuffield Foundation in 1991 to identify,
examine and report on ethical issues raised by recent advances
in biological and medical research. At that time, there was no
national bioethics commission and the government did not have
plans to establish such a body. Since 1994, the Council has
been funded jointly by the Nuffield Foundation, the Medical
Research Council and the Wellcome Trust. The Council's
independence of government has become increasingly important,
particularly as a result of growing public unease about
aspects of biomedicine and biotechnology, and the Council
perceives that its independence is crucial to help maintain
the trust of the public in its work. It has published a number
of reports that focus on ethical and legal issues in genetics,
including genetic screening, genetics and mental disorders,
genetically modified crops, patenting DNA and research into
genetics and human behaviour, and has just initiated a Working
Party on ethical issues associated with pharmacogenetics (
Box 3).
The Chairman of the Council is appointed by the Nuffield
Foundation, after consultation with the two other funding
bodies. The Council appoints its own members independently.
The members, who currently number 16, are drawn from relevant
fields of expertise, including science, medicine, philosophy
and law. They serve on the Council for three years, with the
possibility of an additional three-year term. During its
meetings, the Council reviews recent biomedical and biological
advances that raise ethical questions, and selects topics for
further exploration. It also consults a wide range of external
sources, including government, institutes and societies,
industry, non-governmental bodies and researchers engaged in
biological and biomedical research. For a topic to be
selected, it must be novel (i.e. linked to substantial new
developments in medicine or biology), it must raise ethical
questions and concerns of some complexity, it must be timely;
and it must be amenable to policy recommendations.
In 2001, the Council conducted a survey of leading thinkers
and commentators that asked them to predict what would be the
most ethically controversial developments in biotechnology and
medicine over the next ten years. The responses, which centred
on common themes including therapeutic and reproductive
cloning, global justice in healthcare, and the ageing
population, will help inform the future work programme of the
Council. Once the Council has selected a topic, it convenes a
one-day closed Workshop with up to 15 invited experts who are
charged with discussing the ethical issues and recommending
whether the topic should be taken forward by the Council. If
the recommendation is positive, the Council has establishes a
Working Party of up to 15 members to produce a Report or
Discussion Paper.
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