We are working hand-in-hand with the NHS to deliver the Generation Study.
When the Newborn Genomes Programme began, an NHS Steering Group was established to advise and provide guidance on how we can deliver and design our study in a way that respects the interests and structures of the NHS.
As the Programme moves from design to delivery, we are transitioning to the following structures:
The Newborn Genomes NHS Strategic Implementation Group will focus on the study’s delivery and implementation in the NHS; and
The Newborn Genomes NHS Stakeholder Group that will provide a forum for insights and advice from patients, healthcare professionals, and public groups. Membership of this stakeholder group is to be confirmed.
Groups we're working with
NHS partnership - condition-specific oversight
Condition-specific oversight
The Newborn Genomes Programme NHS Clinical Assurance Group (CAG), includes NHS clinical and commissioning experts will provide assurance that clinical pathways are in place to support newborns and families who receive a ‘condition-suspected’ result when they take part in the Generation Study. It is also making sure that consideration is given to the capacity and capability of NHS services to support participants.
CAG’s deliberations are being informed by our engagement with NHS Clinical Reference Group Specialty Advisors and Clinical Leads, who are helping is to work through the list of conditions that could be included in our study. The group is chaired by Dr Vin Diwakar, Medical Director for Transformation, NHS England.
Members:
Dr Dianne Addei, Senior Public Health Advisor, Health Inequalities Programme, NHS England
Lydia Ball, Cardiac Services Lead Commissioner, NHS England
Professor Emma Baple, Medical Director, South West NHS Genomic Laboratory Hub
Professor Jim Bonham, National Laboratory Lead, UK National Screening Committee
Dr Denise Chaffer, President, Royal College of Nursing
Dr Julia Chisolm, Clinical Advisor, NHS Cancer Programme
Professor Prabitha Chitsabesan, Chair, Child and Adolescent Mental Health Services Clinical Reference Group, NHS England
Rebeccah Davies, President, Royal College of Midwifery
Professor Yvonne Doyle, Medical Director and Director of Health Protection, UK Health Security Agency
Dr Ngozi Edi-Osagie, Clinical Lead, Royal College of Paediatrics and Child Health
Dr Charles Fairhurst, Chair, Paediatric Neurosciences Clinical Reference Group, NHS England
Dr Richard Fluck, Chair, Internal Medicine Clinical Reference Group
Professor Neil Gittoes, Chair, Specialised Endocrinology Clinical Reference Group, NHS England
Professor Dame Sue Hill, Chief Scientific Officer and Senior Responsible Officer for Genomics, NHS England
Professor Simon Kenny, Women and Children’s National Programme of Care Lead, NHS England
Professor Mark Kilby, Chair, Genomics Taskforce, Royal College of Obstetricians and Gynaecologists
Dr Robin Lachmann, Chair, Metabolic Disorders Clinical Reference Group, NHS England
Professor Anne Mackie, Director of Screening, UK National Screening Committee
Nicola Hussein, Member, Neonatal and Paediatric Pharmacists Group
William Horsley, Specialised Blood Disorders Lead Commissioner, NHS England
Professor Nick Linker, Chair, Cardiac Services Clinical Reference Group, NHS England
Dr Sarah Bowdin, Chair, Genomics Clinical Reference Group, NHS England
Dr Sue Protheroe, Chair, Paediatric Medicine Clinical Reference Group, NHS England
Anthony Prudhoe, Women and Children’s Point of Care Commissioning Lead, NHS England
Dr Imran Rafi, Genomics Lead, Royal College of General Practitioners
Dr Dame June Raine, Chief Executive, Medicines and Healthcare products Regulatory Agency
Jess Read, Deputy Chief Midwifery Officer for England, NHS England
Professor Sir Mike Richards, Chair, UK National Screening Committee
Dr Sam Roberts, Chief Executive, National Institute for Health and Care Excellence
Steve Russell, National Director of Vaccinations and Screening, NHS England
Dr Richard Scott, Chief Medical Officer and Deputy CEO, Genomics England
Yasmin Stammers, Internal Medicine Lead Commissioner, NHS England
Joan Ward, Metabolic Disorders Commissioning Lead, NHS England Women and Children’s National Programme of Care Clinical Lead, NHS England
David Webb, Chief Pharmaceutical Officer, NHS England
Ian Wren, Specialised Endocrinology Lead Commissioner, NHS England
Working group - communicating results and onward support
Co-chairs:
Nick Meade, Director of Policy, Genetic Alliance
Dr Sarah Bowdin, National Specialty Advisor in Genomics, NHS England
This group is assisting us in designing the process for communicating results and providing onward support for parents whose babies receive ‘condition-suspected’ results. It is also guiding us in the development of resources to support families, and also healthcare-professionals, where such results are returned; and is advising us on how we can work with patient organisations and charities throughout the course of the Generation Study.
Members:
Hazel Attua, Patient Advocate, Sickle Cell Society
Leanne Barrett, Pre-registration Genetic Counsellor, North East Thames Regional Genetics Service
Dr Jane Chudleigh, Senior Lecturer in Child Health, King’s College London
Samuel Chuku, Patient Advocate, Sickle Cell Society
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester Foundation NHS Trust; Clinical Officer for Genomics, Royal College of Paediatrics and Child Health
Dr David Elliman, Community Paediatrician; Clinical Advisory, National Screening Committee
Dr Will Evans, GP with a specialist interest in genetics, Yorkshire Genetic Service
Louise Fish, CEO, Genetic Alliance
Kate Learoyd, Campaign Manager, National Society for Phenylketonuria (NSPKU)
Jordan Cox, Clinical Nurse Specialist - Newborn Screening and Inherited Metabolic Disorders, Birmingham Women’s and Children’s NHS Foundation Trust
Professor David Rees, Professor of Paediatric Haematology, King’s College London
Dr Fiona Ulph, Co-Director, Manchester Centre of Health Psychology
Working group - conditions
Chair: Professor Emma Baple, Medical Director, South West Genomic Laboratory Hub; Professor of Genomic Medicine, University of Exeter
This group has supported the development of principles that underpin the decisions on which genetic conditions should, or should not, be included in the Generation Study (for more information, see ‘Choosing Conditions’). The principles have now been finalised, so this group is dormant for the time-being. However, when the Generation Study begins, the group may convene again to help assess whether the principles are working in practice.
Members:
Professor Elijah Behr, Professor of Cardiovascular Medicine, St George's University of London
Professor Felicity Boardman, Professor in Medicine, Ethics and Society, Warwick Medical School
Dr Mike Champion, Consultant in Children's Inherited Metabolic Diseases and Clinical Lead, Evelina London Children's Hospital
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester University NHS Foundation Trust
Dr David Elliman, Clinical Lead for NHS Newborn Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme, Public Health England
Dr Francis Elmslie, Consultant Clinical Geneticist, St George’s University Hospitals NHS Foundation Trust
Brad Gudger, Founder and Director, Alike
Alison Hall, Senior Advisor (Humanities), PHG Foundation
Sarah Jevons, Head of Policy and Strategy
Donna Kirwan, Genomics Midwifery Lead
Georgina Mayes, Policy and Quality Lead, Institute of Health Visiting
Michelle Lyne, Professional Adviser Education and Regulation, Royal College of Midwives
Dr Emma McCann, Medical Director, North West Genomics Laboratory Hub
Dominic McMullan, Consultant Clinical Scientist, Central and South Genomics Laboratory Hub
Alexandra Pickard, Deputy Director for Genomics
Dr Simon Ramsden, Consultant Clinical Scientist, North West Genomics Laboratory Hub
Jo Revill, CEO, Royal College of Paediatrics and Child Health
Laurence Russell, Senior Policy and Strategy Manager
Professor Rob Taylor, Head of Highly Specialised Mitochondrial Laboratory, Newcastle upon Tyne Hospitals NHS Foundation Trust
Sally Shillaker, Professional Development Officer, Institute of Health Visiting
Professor Caroline Wright, Professor in Genomic Medicine, University of Exeter
Sarah Wynn, CEO, Unique
Working group - education and training
Chair: Professor Kate Tatton-Brown, Consultant in Clinical Genetics, St. George’s University Hospitals NHS Foundation Trust
This group is developing a competence framework to inform the education and training requirements for the Generation Study.
Members:
Dr Michelle Bishop, Associate Director of Learning and Training, Wellcome Genome Campus
Professor Jim Bonham, Clinical Biochemist / Chair of the National Metabolic Biochemistry Network
Heidy Brandon, Genetic Counsellor and education lead, South East Genomic Medicine Service Alliance
Dr Latha Chandramouli, Participant Panel Member, NHS Paediatrician
Jacqui Cowlard, Paediatric CF Clinical Nurse Specialist, Barts Hospital London
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester Foundation NHS Trust; Clinical Officer for Genomics, Royal College of Paediatrics and Child Health
Joanne Hargrave, Lead Midwife, South East Genomic Medicine Service Alliance
Dr Jude Hayward, Royal College of General Practitioners Joint Clinical Champion in Genomics Medicine
Rose Jarvis, Policy Lead, Academy of Medical Royal Colleges
Dr Joanna Kennedy, Paediatric Genetics Registrar, University Hospitals Bristol NHS Foundation Trust
Donna Kirwan, Midwife for Genomics, Nursing and Midwifery Genomics Team NHS England
Michelle Lyne, Education Advisor, Royal College of Midwives
Dr Ed Miller, Senior Education and Development Officer, Genomics Education Programme within Health Education England
Sally Shillaker, Professional Development Officer, Institute of Health Visiting (now Clinical Content Developer, Genomics England)
Professor Dame Helen Stokes-Lampard, Chair, Academy of Medical Royal Colleges
Melanie Watson, Education and Training Lead, SouthWest Genomic Medicine Service Alliance
Chair: Professor Dominic Wilkinson, Professor of Medical Ethics, University of Oxford
This group advises and works with us on ethical issues and questions that relate to the design and delivery of the Generation Study.
Members:
Dr Mark Bale, External Advisor in Genomics and Bioethics
Sarah Bennett-Day, Lead Antenatal and Newborn Screening Midwife, West Suffolk NHS Foundation Trust
Professor Lyn Chitty, Professor of Genetics and Fetal Medicine, UCL
Professor Angus Clarke, Clinical Geneticist and Clinical Professor, Cardiff University
Dr Edward Dove, Reader in Health Law and Regulation, University of Edinburgh
Professor Frances Flinter, Emeritus Professor of Clinical Genetics, King’s College London
Alison Hall, Senior Advisor (Humanities), PHG Foundation
Peter Hopper, member, Participant Panel, Genomics England
Dr Anna Lewis, Research Associate, Justice, Health, and Democracy Impact Initiative, Harvard University
Professor Anneke Lucassen, Clinical Geneticist and Director, Centre for Personalised Medicine, University of Oxford
Professor Anne Mackie, Director of Programmes, UK National Screening Committee
Nick Meade, Director of Policy, Genetic Alliance UK
Dr Richard Milne, Head of Research and Dialogue, Wellcome Connecting Science
Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London
Professor Nadeem Qureshi, Clinical Professor, University of Nottingham
Professor Anne-Marie Slowther, Professor of Clinical Ethics, University of Warwick
Dr Mehrunisha Suleman, Director of Medical Ethics and Law Education, University of Oxford
Dr Sarah Wynn, Chief Executive Officer, Unique
Working group - evaluation
Chair: Professor Lyn Chitty, Professor of Genetics and Fetal Medicine, UCL
This group supports us to develop and structure research questions that will inform the evaluation of the Generation Study. The outcomes of evaluation will be shared with stakeholders including the UK National Screening Committee, NHS England, and Government, who will make decisions about whether to offer genome sequencing to all babies in England.
Members:
Professor Jim Bonham, Clinical Biochemist / Chair of the National Metabolic Biochemistry Network
Professor Jim Chilcott, Professor of Healthcare Decision Modelling, University of Sheffield
Professor Naomi Fulop, Professor of Health Care Organisation and Management, UCL
Professor Jenny Hewison, Professor of the Psychology of Healthcare, University of Leeds
Dr Mel Hill, Senior Social Scientist, North Thames Genomic Laboratory Hub
Sarah Jevons, Head of Policy and Strategy, Genomics Unit, NHS England
Dr Celine Lewis, Senior Behavioural Scientist, UCL
Professor Anne Mackie, Director of Programmes, National Screening Committee
John Marshall, Evidence Lead, NHS Screening Programmes
Dave McCormick, Member, Participant Panel, Genomics England
Dr Cecilia Vindrola, Director, Rapid Research Evaluation and Appraisal Lab, UCL
Professor Sarah Wordsworth, Professor of Health Economics, University of Oxford
Working group - recruitment
Chair: Rebecca Middleton, Member, Participant Panel, Genomics England
This group has supported us to establish how families of potential participants could be made aware of the Generation Study, and the information and resources they might need to make a decision about taking part. The group has been integral to the development of participant information materials, including an information sheet, website, and decision aid.
Members:
Waheeda Abbas, Midwifery Lead in Genomics, North West Genomic Medicine Service Alliance
Sally Bridges, Programme Manager, Born in Bradford
Isabelle Cornet, Interim Director of Midwifery, Whittington Health NHS Foundation Trust
Katarzyna Gajewska-Knapik, Consultant in Obstetrics, Cambridge University Hospitals NHS Foundation Trust
Charlotte Hitchcock, Associate Director of Genomic Nursing and Midwifery, Central and South Genomic Medicine Service Alliance
Sandra Igwe, Founder, The Motherhood Group
Donna Kirwan, Midwife for Genomics, Nursing and Midwifery Genomics Team NHS England
Kerrianne O’Rourke, Patient and Public Involvement Coordinator, Royal College of Obstetricians and Gynaecologists
Ilana Pizer-Mason, Midwife, Whittington Health NHS Foundation Trust
Charles Steward, Member, Participant Panel, Genomics England (now Genomics England’s Head of Patient Engagement)
NHS partnership - condition-specific oversight
Condition-specific oversight
The Newborn Genomes Programme NHS Clinical Assurance Group (CAG), includes NHS clinical and commissioning experts will provide assurance that clinical pathways are in place to support newborns and families who receive a ‘condition-suspected’ result when they take part in the Generation Study. It is also making sure that consideration is given to the capacity and capability of NHS services to support participants.
CAG’s deliberations are being informed by our engagement with NHS Clinical Reference Group Specialty Advisors and Clinical Leads, who are helping is to work through the list of conditions that could be included in our study. The group is chaired by Dr Vin Diwakar, Medical Director for Transformation, NHS England.
Members:
Dr Dianne Addei, Senior Public Health Advisor, Health Inequalities Programme, NHS England
Lydia Ball, Cardiac Services Lead Commissioner, NHS England
Professor Emma Baple, Medical Director, South West NHS Genomic Laboratory Hub
Professor Jim Bonham, National Laboratory Lead, UK National Screening Committee
Dr Denise Chaffer, President, Royal College of Nursing
Dr Julia Chisolm, Clinical Advisor, NHS Cancer Programme
Professor Prabitha Chitsabesan, Chair, Child and Adolescent Mental Health Services Clinical Reference Group, NHS England
Rebeccah Davies, President, Royal College of Midwifery
Professor Yvonne Doyle, Medical Director and Director of Health Protection, UK Health Security Agency
Dr Ngozi Edi-Osagie, Clinical Lead, Royal College of Paediatrics and Child Health
Dr Charles Fairhurst, Chair, Paediatric Neurosciences Clinical Reference Group, NHS England
Dr Richard Fluck, Chair, Internal Medicine Clinical Reference Group
Professor Neil Gittoes, Chair, Specialised Endocrinology Clinical Reference Group, NHS England
Professor Dame Sue Hill, Chief Scientific Officer and Senior Responsible Officer for Genomics, NHS England
Professor Simon Kenny, Women and Children’s National Programme of Care Lead, NHS England
Professor Mark Kilby, Chair, Genomics Taskforce, Royal College of Obstetricians and Gynaecologists
Dr Robin Lachmann, Chair, Metabolic Disorders Clinical Reference Group, NHS England
Professor Anne Mackie, Director of Screening, UK National Screening Committee
Nicola Hussein, Member, Neonatal and Paediatric Pharmacists Group
William Horsley, Specialised Blood Disorders Lead Commissioner, NHS England
Professor Nick Linker, Chair, Cardiac Services Clinical Reference Group, NHS England
Dr Sarah Bowdin, Chair, Genomics Clinical Reference Group, NHS England
Dr Sue Protheroe, Chair, Paediatric Medicine Clinical Reference Group, NHS England
Anthony Prudhoe, Women and Children’s Point of Care Commissioning Lead, NHS England
Dr Imran Rafi, Genomics Lead, Royal College of General Practitioners
Dr Dame June Raine, Chief Executive, Medicines and Healthcare products Regulatory Agency
Jess Read, Deputy Chief Midwifery Officer for England, NHS England
Professor Sir Mike Richards, Chair, UK National Screening Committee
Dr Sam Roberts, Chief Executive, National Institute for Health and Care Excellence
Steve Russell, National Director of Vaccinations and Screening, NHS England
Dr Richard Scott, Chief Medical Officer and Deputy CEO, Genomics England
Yasmin Stammers, Internal Medicine Lead Commissioner, NHS England
Joan Ward, Metabolic Disorders Commissioning Lead, NHS England Women and Children’s National Programme of Care Clinical Lead, NHS England
David Webb, Chief Pharmaceutical Officer, NHS England
Ian Wren, Specialised Endocrinology Lead Commissioner, NHS England
Working group - communicating results and onward support
Co-chairs:
Nick Meade, Director of Policy, Genetic Alliance
Dr Sarah Bowdin, National Specialty Advisor in Genomics, NHS England
This group is assisting us in designing the process for communicating results and providing onward support for parents whose babies receive ‘condition-suspected’ results. It is also guiding us in the development of resources to support families, and also healthcare-professionals, where such results are returned; and is advising us on how we can work with patient organisations and charities throughout the course of the Generation Study.
Members:
Hazel Attua, Patient Advocate, Sickle Cell Society
Leanne Barrett, Pre-registration Genetic Counsellor, North East Thames Regional Genetics Service
Dr Jane Chudleigh, Senior Lecturer in Child Health, King’s College London
Samuel Chuku, Patient Advocate, Sickle Cell Society
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester Foundation NHS Trust; Clinical Officer for Genomics, Royal College of Paediatrics and Child Health
Dr David Elliman, Community Paediatrician; Clinical Advisory, National Screening Committee
Dr Will Evans, GP with a specialist interest in genetics, Yorkshire Genetic Service
Louise Fish, CEO, Genetic Alliance
Kate Learoyd, Campaign Manager, National Society for Phenylketonuria (NSPKU)
Jordan Cox, Clinical Nurse Specialist - Newborn Screening and Inherited Metabolic Disorders, Birmingham Women’s and Children’s NHS Foundation Trust
Professor David Rees, Professor of Paediatric Haematology, King’s College London
Dr Fiona Ulph, Co-Director, Manchester Centre of Health Psychology
Working group - conditions
Chair: Professor Emma Baple, Medical Director, South West Genomic Laboratory Hub; Professor of Genomic Medicine, University of Exeter
This group has supported the development of principles that underpin the decisions on which genetic conditions should, or should not, be included in the Generation Study (for more information, see ‘Choosing Conditions’). The principles have now been finalised, so this group is dormant for the time-being. However, when the Generation Study begins, the group may convene again to help assess whether the principles are working in practice.
Members:
Professor Elijah Behr, Professor of Cardiovascular Medicine, St George's University of London
Professor Felicity Boardman, Professor in Medicine, Ethics and Society, Warwick Medical School
Dr Mike Champion, Consultant in Children's Inherited Metabolic Diseases and Clinical Lead, Evelina London Children's Hospital
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester University NHS Foundation Trust
Dr David Elliman, Clinical Lead for NHS Newborn Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme, Public Health England
Dr Francis Elmslie, Consultant Clinical Geneticist, St George’s University Hospitals NHS Foundation Trust
Brad Gudger, Founder and Director, Alike
Alison Hall, Senior Advisor (Humanities), PHG Foundation
Sarah Jevons, Head of Policy and Strategy
Donna Kirwan, Genomics Midwifery Lead
Georgina Mayes, Policy and Quality Lead, Institute of Health Visiting
Michelle Lyne, Professional Adviser Education and Regulation, Royal College of Midwives
Dr Emma McCann, Medical Director, North West Genomics Laboratory Hub
Dominic McMullan, Consultant Clinical Scientist, Central and South Genomics Laboratory Hub
Alexandra Pickard, Deputy Director for Genomics
Dr Simon Ramsden, Consultant Clinical Scientist, North West Genomics Laboratory Hub
Jo Revill, CEO, Royal College of Paediatrics and Child Health
Laurence Russell, Senior Policy and Strategy Manager
Professor Rob Taylor, Head of Highly Specialised Mitochondrial Laboratory, Newcastle upon Tyne Hospitals NHS Foundation Trust
Sally Shillaker, Professional Development Officer, Institute of Health Visiting
Professor Caroline Wright, Professor in Genomic Medicine, University of Exeter
Sarah Wynn, CEO, Unique
Working group - education and training
Chair: Professor Kate Tatton-Brown, Consultant in Clinical Genetics, St. George’s University Hospitals NHS Foundation Trust
This group is developing a competence framework to inform the education and training requirements for the Generation Study.
Members:
Dr Michelle Bishop, Associate Director of Learning and Training, Wellcome Genome Campus
Professor Jim Bonham, Clinical Biochemist / Chair of the National Metabolic Biochemistry Network
Heidy Brandon, Genetic Counsellor and education lead, South East Genomic Medicine Service Alliance
Dr Latha Chandramouli, Participant Panel Member, NHS Paediatrician
Jacqui Cowlard, Paediatric CF Clinical Nurse Specialist, Barts Hospital London
Dr Ngozi Edi-Osagie, Consultant Neonatologist, Manchester Foundation NHS Trust; Clinical Officer for Genomics, Royal College of Paediatrics and Child Health
Joanne Hargrave, Lead Midwife, South East Genomic Medicine Service Alliance
Dr Jude Hayward, Royal College of General Practitioners Joint Clinical Champion in Genomics Medicine
Rose Jarvis, Policy Lead, Academy of Medical Royal Colleges
Dr Joanna Kennedy, Paediatric Genetics Registrar, University Hospitals Bristol NHS Foundation Trust
Donna Kirwan, Midwife for Genomics, Nursing and Midwifery Genomics Team NHS England
Michelle Lyne, Education Advisor, Royal College of Midwives
Dr Ed Miller, Senior Education and Development Officer, Genomics Education Programme within Health Education England
Sally Shillaker, Professional Development Officer, Institute of Health Visiting (now Clinical Content Developer, Genomics England)
Professor Dame Helen Stokes-Lampard, Chair, Academy of Medical Royal Colleges
Melanie Watson, Education and Training Lead, SouthWest Genomic Medicine Service Alliance
Chair: Professor Dominic Wilkinson, Professor of Medical Ethics, University of Oxford
This group advises and works with us on ethical issues and questions that relate to the design and delivery of the Generation Study.
Members:
Dr Mark Bale, External Advisor in Genomics and Bioethics
Sarah Bennett-Day, Lead Antenatal and Newborn Screening Midwife, West Suffolk NHS Foundation Trust
Professor Lyn Chitty, Professor of Genetics and Fetal Medicine, UCL
Professor Angus Clarke, Clinical Geneticist and Clinical Professor, Cardiff University
Dr Edward Dove, Reader in Health Law and Regulation, University of Edinburgh
Professor Frances Flinter, Emeritus Professor of Clinical Genetics, King’s College London
Alison Hall, Senior Advisor (Humanities), PHG Foundation
Peter Hopper, member, Participant Panel, Genomics England
Dr Anna Lewis, Research Associate, Justice, Health, and Democracy Impact Initiative, Harvard University
Professor Anneke Lucassen, Clinical Geneticist and Director, Centre for Personalised Medicine, University of Oxford
Professor Anne Mackie, Director of Programmes, UK National Screening Committee
Nick Meade, Director of Policy, Genetic Alliance UK
Dr Richard Milne, Head of Research and Dialogue, Wellcome Connecting Science
Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London
Professor Nadeem Qureshi, Clinical Professor, University of Nottingham
Professor Anne-Marie Slowther, Professor of Clinical Ethics, University of Warwick
Dr Mehrunisha Suleman, Director of Medical Ethics and Law Education, University of Oxford
Dr Sarah Wynn, Chief Executive Officer, Unique
Working group - evaluation
Chair: Professor Lyn Chitty, Professor of Genetics and Fetal Medicine, UCL
This group supports us to develop and structure research questions that will inform the evaluation of the Generation Study. The outcomes of evaluation will be shared with stakeholders including the UK National Screening Committee, NHS England, and Government, who will make decisions about whether to offer genome sequencing to all babies in England.
Members:
Professor Jim Bonham, Clinical Biochemist / Chair of the National Metabolic Biochemistry Network
Professor Jim Chilcott, Professor of Healthcare Decision Modelling, University of Sheffield
Professor Naomi Fulop, Professor of Health Care Organisation and Management, UCL
Professor Jenny Hewison, Professor of the Psychology of Healthcare, University of Leeds
Dr Mel Hill, Senior Social Scientist, North Thames Genomic Laboratory Hub
Sarah Jevons, Head of Policy and Strategy, Genomics Unit, NHS England
Dr Celine Lewis, Senior Behavioural Scientist, UCL
Professor Anne Mackie, Director of Programmes, National Screening Committee
John Marshall, Evidence Lead, NHS Screening Programmes
Dave McCormick, Member, Participant Panel, Genomics England
Dr Cecilia Vindrola, Director, Rapid Research Evaluation and Appraisal Lab, UCL
Professor Sarah Wordsworth, Professor of Health Economics, University of Oxford
Working group - recruitment
Chair: Rebecca Middleton, Member, Participant Panel, Genomics England
This group has supported us to establish how families of potential participants could be made aware of the Generation Study, and the information and resources they might need to make a decision about taking part. The group has been integral to the development of participant information materials, including an information sheet, website, and decision aid.
Members:
Waheeda Abbas, Midwifery Lead in Genomics, North West Genomic Medicine Service Alliance
Sally Bridges, Programme Manager, Born in Bradford
Isabelle Cornet, Interim Director of Midwifery, Whittington Health NHS Foundation Trust
Katarzyna Gajewska-Knapik, Consultant in Obstetrics, Cambridge University Hospitals NHS Foundation Trust
Charlotte Hitchcock, Associate Director of Genomic Nursing and Midwifery, Central and South Genomic Medicine Service Alliance
Sandra Igwe, Founder, The Motherhood Group
Donna Kirwan, Midwife for Genomics, Nursing and Midwifery Genomics Team NHS England
Kerrianne O’Rourke, Patient and Public Involvement Coordinator, Royal College of Obstetricians and Gynaecologists
Ilana Pizer-Mason, Midwife, Whittington Health NHS Foundation Trust
Charles Steward, Member, Participant Panel, Genomics England (now Genomics England’s Head of Patient Engagement)
Engagement and co-design
Sitting alongside these structures is a programme of co-design and engagement with parents, expectant parents, community leaders, and members of the public. Further details on these aspects of our work are in the engagement tab.
Broader Genomics England governance
Other structures and groups at Genomics England are also integral to guiding the development of the Generation Study. This includes the Participant Panel, made up of a diverse group of people whose data is held in the National Genomic Research Library. The Panel advises the Genomics England Board and actively engages in decision-making across other committees and boards, playing a vital role in promoting participants’ interests across our work.
Genomics England also has several independent advisory committees that report to the board.
Our team – led by Alice Tuff-Lacey – includes those with expertise including clinical care, user design, data, ethics, engineering, engagement, and project management.
