Minutes of the meeting held on 7 February 2001
Tue, 16 August 2005
3rd 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 Wednesday 7 February 2001
PRESENT
Professor Bob Hepple (Chairman)
Dr Tom Shakespeare
Professor Tom Baldwin
Professor Anita Thapar
Dr Paul Pharoah
Mr Pushpinder Saini
Professor Terrie Moffitt
Professor Annette Karmiloff-Smith
SECRETARIAT
Dr Sandy Thomas
Tor Lezemore
APOLOGIES
Professor Martin Bobrow
Professor Andrew Wilkie
Professor Martin Richards
Professor Nicholas Rawlins
Professor Sandy McCall Smith
CHAIRMAN’S INTRODUCTION
1 The Chairman welcomed the group.
MINUTES OF MEETING HELD ON 14 DECEMBER (RECIRCULATED)
2 Two corrections were noted. The minutes were then approved as correct.
MATTERS ARISING
5 The Chairman noted that Professor Nicholas Rawlins had agreed to
join the Working Party and would attend the next meeting.
6 It was noted that though it was implicit in the terms of reference, the Working Party must address the discrete issue of whether genetic tests should be developed before going on to assess their implications.
PUBLIC CONSULTATION
7 Numerous additions and amendments to the document were suggested. The aim was to complete the document by early March to enable its distribution during Science Week (19-25 March 2001). Working Party members agreed to inform the Secretariat of any additional individuals or groups they felt should be added to the consultee list.
8 A public meeting on the topic of behavioural genetics research was being co-ordinated by a Working Party member in Newcastle and copies of the consultation document would be made available for distribution at this event. The possibility of a meeting with the Royal Society’s biology section would also be investigated.
DISCUSSION OF MEMBERS’ CONTRIBUTIONS
Legal issues
9 Three international legal instruments were considered, namely the Council of Europe’s Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (1997), UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997) and the EU Charter of Fundamental Rights of the European Union. The issues of discrimination and genetic testing for the purposes of insurance or employment were considered in light of these legal instruments.
10 There was an important question about the boundaries of disease and normal variation. For example, one individual may have an IQ score of 80 as a result of a disease, and thus be eligible for genetic testing and subsequent intervention. However, another individual could have an IQ score of 80 without an underlying pathological reason for this and thus any intervention to increase this might be seen as an enhancement rather than correction. Thus the two individuals might be offered different interventions.
11 The Working Party considered the definition of eugenics. The working group involved in drafting the Charter of Fundamental Rights of the European Union had been divided over the precise definition of a eugenic practice. They had ultimately defined eugenics as the use of genetic information to select whether people are born or to correct a problem. Previous Council Working Parties had addressed this question in the contexts of genetic screening for disease and genetic research into mental disorders. The relevant sections of previous reports would be circulated to the Working Party to inform their deliberations.
12 There was some discussion about the boundary between treatment and enhancement. There was also the question of whether, within the category of enhancement, there was a moral distinction to be made between the methods used to achieve enhancement. Were genetic enhancements morally different to non-genetic enhancements?
13 It would be useful to have a statement for the Working Party of existing law and practices in relation to genetic testing in the UK. The Secretariat would prepare this for the next meeting.
Ethical issues
14 The implications of genetic testing were considered. Two types of genetic knowledge could be distinguished – knowledge about what the future holds for me, and knowledge of facts about the human species in general. People may have different preferences for acquiring the different types of information.
15 There was an important but not easily articulated view or intuition about the ‘wrongness’ of genetic selection of behavioural traits that was perhaps commonly held. One possible interpretation was that the view derived from Kantian concerns about using people as means rather than treating them as ends in themselves. In this case, a parent who selected a child’s traits would be using the child as a means to obtain their own end of the satisfaction of their expectations. Another approach was to consider what Joel Feinberg called the child’s right to an open future. This meant that every individual had a right to develop their life according to their own choices, desires and preferences, which would be constrained if someone else had already selected their characteristics on their behalf.
16 The Working Party discussed the wider concerns about the impact of the selection of characteristics on a society. The public and social consequences of selection were very important. However, there were other non-consequentialist concerns that were equally important, such as the unacceptable suggestion that some forms of human life are superior to others.
17 It was important to note that genetic variation is partly the result of adapting to particular environments, and is therefore vital for the sustained existence of every species. A well known example was the herd of cattle in Northumbria which had become so well adapted to their own environment that they died if they were removed from it.
18 There was a question about whether a trait that fell within the normal range could nonetheless be undesirable. Desirability was socially determined even though there may statistically be an ‘ideal’ point along the range of normal variation. One example would be if an individual with an IQ of say 140 had a head injury which reduced his IQ to 100. The individual would want to be restored to his original level, even though a score of 100 is ‘normal’. Another example was the ‘normal’ level of blood cholesterol in our society which is nonetheless undesirable.
Free will
19 There was an interesting philosophical question about whether increased knowledge of genetic influences on our behaviour had important implications for our conception of free will and responsibility. Various approaches to the problem of free will and determinism were outlined and discussed in the context of research into behavioural genetics.
ANY OTHER BUSINESS
20 The Working Party discussed the arrangements for preparing work for the next meeting.
Last Updated Tue, 16 August 2005