How we work
Designing the NHS-embedded Generation Study
How we work
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
Groups we have worked 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)
- Kerry Leeson-Beevers, Chief Executive, Alström Syndrome UK; Project Lead, Breaking Down Barriers
- Helen Mendis, Member, Participant Panel, Genomics England
- Rebecca Middleton, Member, Participant Panel, Genomics England
- Dr Julian Raiman, Consultant, Inherited Metabolic Conditions, Birmingham Women’s and Children’s NHS Foundation Trust
- Colette Scrace, Lead Nurse, Genomics Unit, NHS England
- Shelley Simmonds, Member, Participant Panel, Genomics England
- Dr Sarah Wynn, CEO, Unique
- Lauren Capacchione, Senior Midwifery Project Lead, Cambridge University Hospitals NHS Trust
- 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
- Dr Jessica Woods, Obstetrician, Clinical Genomics Fellow, Leeds Teaching Hospitals NHS Trust
Working group - ethics
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, CEO of Vascular Voice Network
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
- Kerry Leeson-Beevers, Chief Executive, Alström Syndrome UK; Project Lead, Breaking Down Barriers
- Kerrianne O’Rourke, Patient and Public Involvement Coordinator, Royal College of Obstetricians and Gynaecologists
- Ilana Pizer-Mason, Midwife, Whittington Health NHS Foundation Trust
- Dr Charles Steward, Head of Patient and Participant Engagement, Genomics England
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)
- Kerry Leeson-Beevers, Chief Executive, Alström Syndrome UK; Project Lead, Breaking Down Barriers
- Helen Mendis, Member, Participant Panel, Genomics England
- Rebecca Middleton, Member, Participant Panel, Genomics England
- Dr Julian Raiman, Consultant, Inherited Metabolic Conditions, Birmingham Women’s and Children’s NHS Foundation Trust
- Colette Scrace, Lead Nurse, Genomics Unit, NHS England
- Shelley Simmonds, Member, Participant Panel, Genomics England
- Dr Sarah Wynn, CEO, Unique
- Lauren Capacchione, Senior Midwifery Project Lead, Cambridge University Hospitals NHS Trust
- 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
- Dr Jessica Woods, Obstetrician, Clinical Genomics Fellow, Leeds Teaching Hospitals NHS Trust
Working group - ethics
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, CEO of Vascular Voice Network
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
- Kerry Leeson-Beevers, Chief Executive, Alström Syndrome UK; Project Lead, Breaking Down Barriers
- Kerrianne O’Rourke, Patient and Public Involvement Coordinator, Royal College of Obstetricians and Gynaecologists
- Ilana Pizer-Mason, Midwife, Whittington Health NHS Foundation Trust
- Dr Charles Steward, Head of Patient and Participant Engagement, Genomics England
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.
You can find out more about these groups on the governance pages.
The Newborn Genomes Programme team
Our team – led by Alice Tuff-Lacey – includes those with expertise including clinical care, user design, data, ethics, engineering, engagement, and project management.
