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LEGISLATION RELATING TO ORGAN AND TISSUE DONATION AND TRANSPLANTATION: ANALYSIS OF CONSULTATION RESPONSES
ANNEX 1: LIST OF RESPONDENTS
Helen Angus
Baptist Union of Scotland
Borders Local Health Council
British Medical Association Scotland
Pearl Cameron
Joyce Cottle
East Kilbride LHCC
Faculty of Advocates
Forth Valley Acute Hospitals
Forth Valley Local Health Council X 2 responses
General Medical Council
Greater Glasgow Health Council
Professor Barry Gusterston
John Heaney
Highland and Islands Kidney Patients Association
Brian Junor, Consultant Nephrologist, Western Infirmary, Glasgow
Medical and Dental Defence Union of Scotland (MDDUS)
Teresa McNally
National Kidney Research Fund
National Services Scotland
NHS Ayrshire and Arran
NHS Education for Scotland
NHS Lothian - Public Health and Health Policy
Dr David Nichols
Ann Paris
Carole Prentice, Lanarkshire Health Council
Dr Tristan Roberts
Dr Stuart Rodgers, Consultant Nephrologist, Western Infirmary, Glasgow
Susanne Roff, Centre for Medical Education, Dundee University Medical School
Royal College of Pathologists
Royal College of General Practitioners
Royal College of Nursing
Royal College of Paediatrics and Child Health Scotland
Royal College of Physicians and Surgeons of Glasgow
Royal College of Physicians of Edinburgh
Royal College of Surgeons, Edinburgh
Sidney Ryder, Forth Valley 500 Member
Scottish Council of Jewish Communities
Scottish Council on Human Bioethics
Scottish Federation Coordinators Network (STCN)
Scottish National Blood Transfusion Service
South Glasgow University Hospital Division, NHS Greater Glasgow
Lynda Spence
David Talbot, Freeman Hospital, Newcastle on Tyne
The Law Society of Scotland
UK Transplant
University of Aberdeen, Department of Medicine and Therapeutics
University of Dundee, Division of Pathology and Neuroscience
University of Edinburgh, Pathology Department, School of Molecular and Clinical Medicine
University of York, Biology Department
An additional 10 responses were received from individual respondents who did not wish their names to be disclosed.
ANNEX 2: LIST OF CONSULTEES
Accident and Emergency Departments, Scotland
Action of Churches Together in Scotland
Africa Centre Scotland
Age Concern Scotland
Asian Concern
Asian Welfare Association
Associated Presbyterian Churches of Scotland
Association for Children with Heart Disorders
Association of Clinical Pathologists
Baptist Union of Scotland
Black & Minority Ethnic Elders Group
BMA Scottish Office
British Association of Tissue Banks
British Liver Foundation
British Lung Foundation
British Organ Donor Society (BODY)
British Paediatric Pathology, Scottish Branch
British Transplantation Society
Church of Scotland
Churches Agency for Inter-faith Relations in Scotland
Citizens Advice Scotland
Commission for Racial Equality
Confederation of Scotland Council of Christian & Jews
Confederation of Scotland's Elderly
COSLA
CRUSE Bereavement Care
Department of Biomedical Sciences, University of Aberdeen
Department of Forensic Medicine & Science, University of Glasgow
Department of General Practice, University of Edinburgh
Department of Health, London
Department of Pathology, Western Infirmary, Glasgow
Disability Rights Commission
Equal Opportunities Commission
Ethics & Advisory Committee, Royal College of Paediatrics and Child Health
European Members of the Parliament
Evangelical Alliance Scotland
Faculty of Advocates
Free Church of Scotland
Free Presbyterian Church of Scotland
General Medical Council
Head of Biological & Clinical Laboratory Sciences, University of Edinburgh
Head of Bute Medical School, University of St. Andrew's
Head of Life Sciences, University of Dundee
Health & Community Care Committee, Scottish Parliament
Help the Aged Scotland
Hospital Chaplains Association
Justice for the Innocents
Link Nurses
Local Authority Chief Executives
Local Health Councils
Local Research Ethics Committees
Medical & Dental Defence Union of Scotland
Medical Research Council
MRC Social & Public Sciences Unit, University of Glasgow
National Kidney Research Fund
National Services Division of Common Services Agency
Neuropathology Department, University of Edinburgh
NHS Board Chief Executives
NHS Board Medical Directors
NHS Health Scotland
NHS Trust Chief Executives
NHS Trust Medical Directors
Office of the Chief Rabbi
Participants of the Non-heartbeating Donation Conference
Participants of the Organ Donation Conference
Procurators Fiscal Society
Professor Sheila McLean, University of Glasgow
Reform of Synagogues of Great Britain
Reformed Presbyterian Church of Scotland
Religious Society of Friends (Quakers)
Retained Organ Commission
Roman Catholic Church
Royal College of Anaesthetists
Royal College of General Practitioners
Royal College of Nursing, Scottish Branch
Royal College of Paediatrics and Child Health
Royal College of Pathologists, London
Royal College of Physicians & Surgeons of Glasgow
Royal College of Physicians of Edinburgh
Royal College of Surgeons of Edinburgh
Royal Society of Edinburgh
Scottish Association of Chaplains in Healthcare
Scottish Churches Parliamentary Office
Scottish Civic Forum
Scottish Cot Death Trust
Scottish Council for Voluntary Organisations
Scottish Council, Royal College of Pathologists
Scottish Deans of Medical Schools
Scottish Episcopal Church
Scottish Executive Library
Scottish Federation of Kidney Patients Association
Scottish Intensive Care Society
Scottish Inter-faith Council
Scottish Law Commission
Scottish Medico-legal Society
Scottish National Blood Transfusion Service
Scottish Organisation Relating to the Retention of Organs (SORRO)
Scottish Partnership Forum
Scottish Pensioners Association
Scottish Pensioners Forum
Scottish Regional Council, Institute of Biomedical Sciences
Scottish Transplant Coordinators Network
Scottish Transplant Group
Scottish Transplant Support Network
SPICe
Stillbirth and Neonatal Death Society (SANDS)
The Institute of Biomedical & Life Sciences, University of Glasgow
The Law Society of Scotland
The Patients Council
Transplants in Mind (TIME)
UK Central Council for Nursing, Midwifery and Health Visiting
UK Transplant
United Free Church of Scotland
Voluntary Sector Health Network
Welsh Assembly Government
West of Scotland Seniors Forum
Individual members of the public who have written to the Minister on related matters and individual members of the public and health professionals who request a copy.
ANNEX 3: MISCELLANEOUS ISSUES
RESPONSES CONTAINING DETAILED DRAFTING POINTS
1 Indiv
8 Indiv
10 Educ
20 Pub Rep
27 Educ
28 NHS/Med
31 Prof Rep
41 NHS/Med
42 Indiv
43 Prof Rep
44 Acad
51 Educ
62 Indiv
RELEVANT COMMENTS/ISSUES NOT COVERED IN RESPONSES TO QUESTIONS RAISED BY THE CONSULATION PAPER
More thought needs to be given to the relative gravity of trafficking in organs/tissues (3 Indiv)
Vital that permission is obtained for the use of body parts which are unsuitable for transplantation to be used in research and teaching. Also there should be the option of requesting the use of other body parts from donors which could be valuable, for say, toxicology studies (7 Indiv)
Legislation should allow for compensation of live donors for their expenses and loss of earnings (8 Indiv)
We need clarification on the way coroners preserve organs for transplantation whilst awaiting contact with relatives (10 Educ)
We trust that the new legislation will allow liaison between the different procedures of maintaining tissue and organ banks for post-mortem samples and for transplantation with one common donor card in operation (22 Acad)
It is not good for organ donation legislation to be linked to post-mortem examinations. If potential donors and families see the link between them they could be put off donating as there has been bad publicity and bad practice associated with organ retention (25 Educ)
Agree proposals on Tissue Banking (23 Faith)
Tissue Banking should be part of a UK-wide set-up (36 Indiv)
Commented on various issues relating to Tissue Banking (41 NHS)
There has been little debate on non-heartbeating donation and consultation should take place prior to any new legislation (26 Acad)
We need a high profile publicity campaign which highlights how organ/tissue donation can help others - make this an attractive option for people (34 Pub Rep)
The consultation did not cover clinical debate about the accuracy of brain stem death and ruled out a consideration of elective ventilation. Feel that the public must have a full debate about and an understanding of the procedures prior to being asked to decide on an opt out policy or having to make decisions for their loved ones (38 Indiv)
Will the new regulations cover Jewish or Muslim faiths? What will happen if the surviving relatives object to donation on religious/cultural grounds? (54 Pub Rep)
The teenage focus group we ran was opposed to the idea that under 16s should never be allowed to donate (58 Indiv)
Opting out is our preferred option as there is a widespread belief amongst the population that by holding a donor card you are inviting trouble whereas if this decision is made for you (opting out system) you are "off the hook" (62 Indiv)
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