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Select Committee on Science and Technology Appendices to the Minutes of Evidence


Annex A

TERMS OF REFERENCE AND MEMBERSHIP OF THE HUMAN GENETICS COMMISSION

TERMS OF REFERENCE

    To analyse current and potential developments in human genetics and advise Ministers on:

    —  the likely impact on human health and healthcare;

    —  the social, ethical, legal and economic implications.

    To advise on strategic priorities in the delivery of genetic services by the NHS.

    To advise on strategic priorities for research.

    To develop and implement a strategy to involve and consult the public and other stakeholders and encourage debate on the development and use of human genetic technologies and advise on ways of increasing public knowledge and understanding.

    To co-ordinate and exchange information with relevant bodies in order to:

    —  identify and advise on the effectiveness of existing guidance and of the regulatory and advisory framework as a whole, taking account of European and global dimensions;

    —  look at the lessons learnt from individual cases requiring regulatory decision to build up a wider picture;

    To consider specific issues related to human genetics and related technologies as requested by Ministers.

    To operate in accordance with best practice for public bodies with regard to openness, transparency, accessibility, timeliness and exchange of information.

  A key role of the HGC is to promote debate, to listen and gather public and other stakeholders' views, to consider these thoroughly and to provide its expert advice.

  In considering national issues, HGC will adopt a UK perspective which will include taking account of legal and other differences between England, Scotland, Wales and Northern Ireland, and of the status of devolved and non-devolved matters.

MEMBERSHIP

Chair

  Baroness Helena Kennedy QC  (Barrister and broadcaster)

Vice-Chair

  Professor Alexander McCall Smith  (Professor of Medical Law, University of Edinburgh)

Members

  Dr William Albert  (Chair of the International Committee of the British Council of Disabled People)

  Professor Elizabeth Anionwu  (Professor of Nursing, Head of Mary Seacole Centre for Nursing Practice, Thames Valley University)

  Professor John Burn  (Professor of Clinical Genetics, University of Newcastle upon Tyne and Director, Northern Genetics Service)

  Ms Ruth Evans  (Formerly Director of the National Consumer Council)

  Professor Peter Goodfellow  (Senior Vice-President, Discovery Worldwide, SmithKline Beecham Pharmaceuticals)

  Dr Hilary Harris  (General Practitioner, Manchester)

  Professor John Harris  (Sir David Alliance Professor of Bioethics, University of Manchester)

  Ms Hilary Newiss  (Solicitor)

  Reverend Dr John Polkinghorne  (Canon Theologian of Liverpool and formerly President of Queen's College Cambridge)

  Professor Bruce Ponder  (Professor and Head of Department of Oncology, Cambridge University)

  Professor Martin Richards  (Professor of Family Research, Centre for Family Research, University of Cambridge)

  Dr Gillian Samuels  (Director of Science Policy (Europe), Pfizer)

  Mr Geoffrey Watts  (Journalist and presented of BBC Radio 4's Leading Edge)

  Mr Philip Web  (Trustees of Genetic Interest Group)

  Professor Veronica van Heyningen  Head of Cell Genetics Section, MRC Human Genetics Unit, Edinburgh)

Ex Officio Member

  Ms Ruth Deech  (Chair of Human Fertilisation and Embryology Authority)

Representatives of the Chief Medical Officers

  Each of the four UK Chief Medical Officers will be able to participate in HGC or nominate a representative with observer status.

  Mrs Jackie Axelby (England)  (Chief Executive, Northumberland Health Authority)

  Professor Peter Harper (Wales)  (Professor and consultant in medical genetics, University of Wales)

  Dr Patrick Morrison (Northern Ireland)  (Consultant Clinical Geneticist, Belfast City Hospital)

  Dr Rosalind Skinner (Scotland)  (Principal Medical Officer of Public Health Medical Division, SEHD)


 
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Prepared 3 April 2001