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Minutes of the meeting held on 7 May 2003

Tue, 16 August 2005

5th meeting

NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON PHARMACOGENETICS: ETHICAL ISSUES

Minutes of the Meeting held at
28 Bedford Square, London WC1B3JS
on Wednesday 7 May 2003

PRESENT

Professor Peter Lipton (Chairman)
Professor Nikolas Rose, Professor Albert Weale, Dr Nigel Starey, Professor Haleh Afshar, Professor Klaus Lindpaintner

SECRETARIAT

Dr Sandy Thomas, Tor Lezemore, Natalie Bartle, Nicola Perrin

CHAIRMAN’S INTRODUCTION

1 The Chairman welcomed the group and outlined the schedule for the day.

MINUTES OF MEETING HELD ON 13 MARCH 2003 (RECIRCULATED)

2 The minutes of the last meeting were approved.

DISCUSSION OF PEER REVIEW COMMENTS

3 The Chairman invited members of the Working Party to respond to the comments made by peer reviewers. The comments had been constructive and encouraging, but it was agreed that the final two chapters still required considerable work. Three particular issues were highlighted as requiring further thought: the trade-off between cost-effectiveness and equity; the issue of the time and training that would be involved in delivering pharmacogenetics; and the question of genetic exceptionalism.

4 A further theme was the need to balance the interests of individuals with those of groups.

5 On the subject of genetic exceptionalism, it was difficult to say what the public response to pharmacogenetics might be, since there was very little survey data on the subject.

6 Specific alterations to the Report proposed by peer reviewers, Council members and Working Party members were discussed. A revised structure to the Report was proposed and agreed.

7 There was some discussion about the question of the role of information about cost-effectiveness in deciding which interventions to provide for patients. The issues regarding patenting discussed in the Report would be clarified.

8 On the subject of race, it was agreed that this was in one sense a special case of the broader question of stratification. The current text would be redrafted.

9 There was some debate about the likelihood that pharmacogenetic information would be relevant to family members.

ANY OTHER BUSINESS

10 It was agreed that an additional meeting would be required to confirm the conclusions and recommendations of the Report. This would be scheduled for late May or early June.

Last Updated Tue, 16 August 2005