Genomics, Healthcare and You Webinar

The Government’s 10 Year Health Plan for England announced a new Genomics England research study involving 150,000 adults to explore how genomics could help identify risks earlier and support more personalised healthcare. 

As plans for the study develop, there are important questions to consider. What information should people be told, and when? How should uncertainty be explained? How should genomic data be used, governed and protected over time? 

To help explore these questions, more than 300 people from across England took part in Genomics, Healthcare and You, a nationwide engagement programme designed to understand public perspectives on the future of genomics in adult healthcare. Through a series of workshops and conversations, participants shared their views on the opportunities, concerns and considerations that should help shape the study. 

About the webinar 

Join us to hear the findings from these conversations and learn what people told us about the future use of genomics in adult healthcare. 
 
The webinar will explore the key themes that emerged from the engagement programme and how these insights could help inform the development of the future research study. There will also be an opportunity to ask questions directly to the team behind the work. 

Hear what people told us about: 

• How genomics could help identify health risks earlier
• The types of genomic information people want to receive about their health
• What helps build trust in the collection, storage and use genomic data
• How we can make sure everyone’s voice is heard when shaping the future of adult healthcare 

Who should attend? 

This webinar is open to anyone with an interest in genomics, healthcare and public involvement, including: 

• Members of the public
• Patients, carers and caregivers
• Healthcare professionals
• Public engagement professionals
• Charities and patient organisations
• Researchers
• Policymakers 

Want to find out more? 

Read what the Genomics, Healthcare and You engagement programme set out to do. 

This programme was delivered in partnership with Hopkins Van Mil, RAND Europe, The Social Agency, People Street and The Leap and included engagement with healthcare professionals, global majority communities and a national public dialogue. 

Panelists:

Professor Rich Scott, Chief Executive Officer, Genomics England

Dr Richard Scott joined Genomics England in 2015 and has been CEO since 2023. He is also an Honorary Consultant and Honorary Associate Professor in Clinical Genetics at Great Ormond Street Hospital for Children and the UCL Institute of Child Health where his practice focuses on diagnosing children with rare multisystem disorders.  Richard trained in medicine at Cambridge University and University College London. He specialised in Paediatrics and subsequently Clinical Genetics in London and completed his PhD on childhood cancer syndromes at the Institute of Cancer Research. Through his clinical practice and in his role at Genomics England he is passionate about harnessing the power of new genomic technologies for the benefit of patients in mainstream healthcare.

Natalie Banner, Chief Ethics and Engagement Officer, Genomics England

Natalie joined Genomics England in 2022, bringing a decade of experience in navigating ethical, regulatory and governance issues in the use of genomic and health data, and data-driven technologies. She previously led Understanding Patient Data hosted at the Wellcome Trust, developing accessible communications, qualitative community engagement, policy and advocacy on issues of trust relating to health data. She is a member of the National Data Guardian's Panel. As Chief Ethics & Engagement Officer, Natalie is responsible for embedding ethics, public and participant engagement, meaningful transparency and equitable approaches into Genomics England's programmes and ways of working. Critical to this is ensuring that the organisation is demonstrably a trustworthy steward of participants’ data. Natalie holds a PhD in the philosophy of psychiatry and previously published on issues relating to decision-making capacity in clinical settings.

Anne-Marie Hamilton, Director of Engagement and Public Partnerships, Genomics England

Anne-Marie joined Genomics England in February 2024 as the Director of Engagement and Public Partnerships, responsible for building and maintaining strong, collaborative relationships with a broad range of external stakeholders. This includes leading Genomics England's relationship with the Participant Panel and patient advocacy organisations. Anne-Marie was previously Senior Strategist at Macmillan Cancer Support, responsible for leading the development of Macmillan's future strategy bringing expertise in the future of cancer care. Prior to joining the charity sector, Anne-Marie was a Senior Civil Servant in the Department of Health and Social Care. Her roles included leading on social care quality and safety, corporate programmes for Public Health England and NHS innovation at the Office for Life Sciences.

Judith Hayward, Principal Clinician – Primary Care, Genomics England

Dr. Jude Hayward is a GP in Bradford and GPwER in Genetics / Genomic Medicine with the Leeds Genomic Medicine Service within which she provides a clinical service for Familial Cancer, Inherited Cancer Predisposition Syndromes and Neurofibromatosis Type 1. She has longstanding interests in workforce development and implementation of Genomic Medicine and Genomics-informed Medicines Optimisation in the context of Primary Care.   She is Primary Care Lead for NHSE Genomics Education Programme, Co-chair of the Primary Care Workforce Group for Genomics and Chair of the Primary Care Working Group for GeNotes. As RCGP Joint Clinical Representative for Genomics with Dr. Imran Rafi she has contributed to national strategy, professional development, leadership and clinical policy and was a lead author for the GPwER in Genetics / Genomic Medicine competency framework and RCGP Position statements.  Within her previous role of NW GMSA Innovation Director she led on AI initiatives to support clinicians deliver mainstream genomic testing.  Jude is delighted and excited to bring her experience and expertise into her role as Principal Clinician – Primary Care, Genomics England. 

Chiamaka P. Ojiako, Strategic Engagement Lead, Genomics England

Chiamaka P. Ojiako (Amaka) is a lawyer and health policy professional working at the intersection of data, innovation, and governance in health and development. With experience across the public, non profit, and international development sectors, her work spans global health, digital transformation in health, ethical data governance, and multi stakeholder collaboration.  She has led work on health innovation, Secure Data Environments, AI strategy, and cross-system collaboration to enable the discovery, development, deployment and sustainability of innovation across multiple NHS Trusts. Amaka is a Strategic Engagement Lead at Genomics England, where she designs engagement strategies and delivers programmes, including the Genomics, Healthcare and You engagement programme exploring public and healthcare professional perspectives towards offering genomic testing in healthcare settings for adults without a known, genetically caused or influenced condition.

Henrietta Hopkins, Director, Hopkins Van Mil

Henrietta Hopkins is the Director of Hopkins Van Mil (HVM). HVM creates safe, impartial and productive spaces in which to explore and gain an understanding of people’s views on the content which matters to them and to society. We specialise in deliberative public engagement and social research to build a better society using thoughtful social insights explored and implemented with humanity and kindness.  Henrietta is an expert facilitator and deliberative process designer. She co-founded HVM in 2005, having begun her career as a social researcher and European policy adviser in the arts, museums and heritage sector. Henrietta has over twenty-five years’ experience in designing trusted, creative, thoughtful and collaborative, deliberative engagement and participatory programmes. She works closely with people across society, academics, specialists and policy makers to enable the sensitive, evidence-based exploration of challenging and complex issues.  Henrietta led the partnership engagement programme Genomics, Healthcare and You for Genomics England. Other recent programmes led by Henrietta include public dialogues and deliberative processes on health, data, AI and climate change for UK Research and Innovation, Sciencewise, the Natural Environment Research Council, the Department for Business, Innovation, Science and Technology, the Nuffield Foundation and the Ada Lovelace Institute. Her work in the field has been innovative and does not shy away from issues which are highly sensitive and nuanced, including running the first citizens’ jury on the law on assisted dying in England, and on prison sentencing. She leads a team that works collaboratively, creatively; supporting societal change based on kind, thoughtful and ethical approaches to ensuring that voices are heard on the subjects that matter.