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:
Professor Bob Hepple QC (Chairman)
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
Notes 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.