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)
| 
