Skip to: Main Content | Site Links

Nuffield Council on Bioethics / Home

graphics version | home | site map | web accessibility

Minutes of the meeting held on 9 May 2002

Tue, 16 August 2005

11th meeting

NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON GENETICS AND HUMAN BEHAVIOUR

Minutes of the Meeting held at the Nuffield Foundation 28 Bedford Square, London WC1B 3JS on Thursday 9 May 2002

PRESENT
Professor Bob Hepple (Chairman)
Professor Martin Bobrow
Professor Tom Baldwin
Professor Anita Thapar
Professor Annette Karmiloff-Smith
Dr Tom Shakespeare
Professor Nicholas Rawlins
Dr Paul Pharoah
Professor Martin Richards
Professor Andrew Wilkie

SECRETARIAT
Sandy Thomas
Tor Lezemore
Nicola Perrin
Maria Gonzalez-Nogal
Harald Schmidt
Faith Hummerstone

APOLOGIES
Professor Sandy McCall Smith
Professor Terrie Moffitt
Mr Pushpinder Saini

INTRODUCTION

1 The Chairman welcomed the group and noted that this was the final meeting of the Working Party. The format of the meeting was agreed: the text of the recommendations would first be agreed by the group, then the substantive peer review comments and any resulting changes to the draft Report would be discussed.

MINUTES OF MEETING HELD ON 15 FEBRUARY 2002 (RECIRCULATED)

2 The minutes were approved as correct.

MATTERS ARISING

3 There were none.

CONCLUSIONS AND RECOMMENDATIONS

4 There was some discussion of the use and definition of the term ‘eugenic’. It was important to be clear that there were a variety of practices that could be described as eugenic. It was suggested that the Report should condemn explicitly the eugenic abuses of the early part of the last century. This was done in Chapter 2, but needed to be incorporated into the final chapter as well.

5 There was a debate about whether the group should make a recommendation relating to the funding priority that should be accorded to research in behaviour genetics. This question had been asked in the public consultation and the overwhelming response was that it should receive low priority, or be banned altogether. This was on two grounds: because the likelihood of obtaining successful results was very low, and/or because of concern about the applications of such research. Preventing research into traits in the normal range completely would have a negative effect on research into abnormal traits, since there was a very blurred line between them. In addition, research into the extremes of behaviour could reveal facts about normal behaviour even without this being its intention, so an entire ban on the research would not in practice be possible.

6 It was noted that a clear distinction should be drawn between gene therapy for single disorders and the hypothetical possibility of gene therapy for complex behavioural traits. The latter would be considerably more difficult.

7 The Working Party agreed that this section of the Chapter required considerable thought. The question of societal inequalities being enhanced by differential access to new interventions needed to be explored more thoroughly. The group considered the issue of monitoring and regulating provision of genetic tests in this area. It was noted that the HGC was due to consider monitoring of genetic tests marketed directly to the public later this year, although there would not be a specific focus on behavioural genetics. Drafting on this point would be prepared.

8 The Report would need to discuss PGD and PND separately. Other distinctions could be drawn, for example the use of PGD to select embryos that had already been created through IVF for an infertile couple on the basis of traits in the normal range, compared to the use of IVF and PGD by a fertile couple specifically to select a particular trait. (It was suggested that in the future, all embryos created through IVF would be subjected to screening or PGD).

9 The chapter on legal responsibility would benefit from being reviewed by a criminologist and this would be arranged as soon as possible. Further research would be conducted into how judges receive training on scientific developments.

10 The question of the predictive use of behaviour genetics information before an offence has been committed was raised. It was agreed that this question should be addressed in the Report. The group considered the potential use of genetic tests in children for traits correlated with antisocial behaviour. It was observed that already, children thought to be at high risk of delinquency as a result of environmental risk factors were targeted with special programmes. (Though it was also observed that overall, very little was done to counteract risk factors for which there was already substantial evidence, such as poverty and deprivation). Arguably, adding knowledge of a genetic risk factor to knowledge of environmental risk factors was a logical step. Any risk factor on its own was not likely to be strongly predictive, but used together, more accurate information could perhaps be obtained and used as the basis for intervention. Such intervention could take various forms: one possibility might be the establishment of a register of potential criminals. Less controversial options might be educational programmes or behaviour modification. Currently, predictive genetic testing of children was not encouraged unless a constructive intervention in the child’s best interests was available. It was possible to imagine that genetic influences on traits that might be correlated with antisocial behaviour, such as low intelligence, aggression and so on, might be analogous with dyslexia in that their existence might have a negative effect on the child and on society. In such cases, would predictive genetic testing be desirable? It was agreed that the predictive use of genetic tests for children to assess risk factors linked to antisocial behaviour would be likely to be ruled out by the Human Rights Act.

11 There was some discussion about whether genetic information about behavioural traits would have sufficient predictive power to be useful in the context of insurance. Arguably, although in individual cases it may not be strongly predictive, when used in the context of pooled risks, it may be useful. The risk of adverse selection was a possibility, although evidence for this in relation to genetic disease was slim.

12 Other minor alterations were discussed. The Working Party agreed that it would refer to Huntington’s disease, rather than Huntington disease, which was the American formulation. The phrase ‘to have a gene’ would be replaced where it appeared with ‘to have a genetic mutation’ or ‘to have a genetic variation’.

TIMETABLE

13 The group noted the timetable for the publication of the Report and the proposed public meeting in Glasgow on 24 October 2002.

AOB

14 The Chairman and the Director thanked everyone for their hard work over the past 18 months.

Last Updated Tue, 16 August 2005