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bioethics: Ethics of Research on the Genetics of Human Behaviour
On 5 January, the Nuffield Council on Bioethics published a press release
announcing the membership and terms of reference for a new Working Party
convened to examine the ethics of research into the genetics of human
behaviour. This follows on from a closed Workshop held on this topic in
November 1999. A copy of the press release can be found below. Paper
copies of the press release are also available. Please email me at
ymelia@nuffieldfoundation.org if you would like this sent to you as a word
document.
Further information about this Inquiry can be found on the Council's web
site at: www.nuffieldfoundation.org/bioethics.
The Working Party will seek the views of the public on the issues raised by
research in this area in a public consultation expected to be launched in
March.
If you would like to receive regular updates on developments with this
Inquiry, or be included in a mailing list to receive a copy of the
consultation document when this is published please let me know.
With regards,
Yvonne
*****
5 January 2001
Genetics and Human Behaviour: the Ethical Context
The Nuffield Council on Bioethics announced today a major new inquiry into
the ethics of research into genetics and human behaviour. The Working
Party will seek the public's views in a consultation commencing in March
2001.
Its terms of reference are:
1 To define and consider ethical, social and legal issues arising
from the study of the genetics of variation within the normal range of
behavioural characteristics.
2 To survey the current field of research, in particular, to review:
a the evidence for the relative importance of genetic
influences;
b the basis for characterisation and measurement of behaviour;
c the relationship between normal variation in behaviour
and disease processes.
3 To consider potential applications of the research.
4 To consider:
a the ethics of undertaking research on the genetics of
normal variation in behavioural characteristics on human participants;
b the implications of applying the findings of such research through
the development of genetic tests to establish particular characteristics
in practical contexts including education, employment, insurance, legal
proceedings;
c the particular impact of the findings of a genetic test on the
individual, including an individual child or fetus, on family
members, and on various social groups;
d the broader impact of genetic knowledge on the perception of those
with relevant behavioural characteristics, including questions about stigma.
The Working Party expects to report in 2002. Membership is listed below:
Chairman
Professor Robert Hepple QC
Master, Clare College, Cambridge
Professor Martin Bobrow
Head of Department of Medical Genetics, Cambridge Institute for Medical
Research
Professor Tom Baldwin
Head of Department of Philosophy, University of York
Professor Annette Karmiloff-Smith
Head of Neurocognitive Development Unit, Institute of Child Health, London
Professor Sandy McCall Smith
Professor of Medical Law, University of Edinburgh
Professor Terrie Moffitt
Social, Genetic, and Developmental Psychiatry Research Centre, Institute of
Psychiatry, London
Dr Paul Pharoah
CRC Senior Research Fellow, Strangeways Research Laboratories, Cambridge
Professor Martin Richards
Director of the Centre for Family Research, University of Cambridge
Mr Pushpinder Saini
Barrister, Blackstone Chambers, London
Dr Tom Shakespeare
Policy, Ethics and Life Sciences Research Institute, Newcastle
Professor Anita Thapar
Professor of Child and Adolescent Psychiatry, University of Wales
Professor Andrew Wilkie
Wellcome Senior Research Fellow, Honorary Consultant in Medical Genetics,
Institute of Molecular Medicine, Oxford
NOTE TO EDITORS
The Nuffield Council on Bioethics is an independent body which examines the
ethical issues raised by developments in medicine and biology. Established
in 1991 it is funded by the Nuffield Foundation, the Medical Research
Council and the Wellcome Trust.
The terms of reference of the Council are:
1 To identify and define ethical questions raised by recent advances
in biological and medical research in order to respond to and anticipate
public concern;
2 To make arrangements for examining and reporting on such questions
with a view to promoting public understanding and discussion; this may
lead, where needed, to the formulation of new guidelines by the appropriate
regulatory or other body;
3 In the light of the outcome of its work, to publish reports and to
make representations, as the Council may judge appropriate.
The reports issued by the Council are:
Genetic screening: ethical issues (1993)
Human tissue: ethical and legal issues (1995)
Animal-to-human transplants: the ethics of xenotransplantation (1996)
Mental disorders and genetics: the ethical context (1998)
Genetically modified crops: the ethical and social issues (1999)
The ethics of clinical research in developing countries a discussion paper
(1999)
Stem cell therapy: the ethical issues a discussion paper (2000)
Yvonne Melia
Research Assistant
Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS
Tel: + 44 (0) 20 7681 9625
Fax: +44 (0) 20 7637 1712
Email: ymelia@nuffieldfoundation.org
Web site: http://www.nuffieldfoundation.org/bioethics/
*****
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