Anna Middleton

Professor Anna  Middleton

Associate Director
Engagement and Society

“I am inspired by people – how they make sense of the world, how they communicate and within the context of genetics, how they make meaning of the science. The availability of genetic technology creates fascinating social and ethical issues for us all. I am continually asking ‘what does this mean for diverse public audiences’ and ‘how can we help society guide the technology, rather than the other way around’”

Professor Anna Middleton embodies the fusion of disciplinary expertise and visionary leadership. As the architect of the Engagement and Society group at Wellcome Connecting Science, she steers academic conversation into the realm of public engagement and ethical debate.

Anna is Director of the Kavli Centre for Ethics, Science, and the Public at the University of Cambridge, created through a partnership with Wellcome Connecting Science. The Centre connects the rigours of academic pursuit with the principles of public engagement, cultivating a generation of PhD scholars prepared to navigate and shape the interdisciplinary nexus of discovery science.

Building a career based on a PhD in Psychology and Genetics, an MSc in Genetic Counselling, and a BSc in Genetics, Anna has delivered significant leadership roles, e.g. past chair of the Association of Genetic Nurses and Counsellors, and vice-chair of the former Genetic Counselling Registration Board, these have positioned her as an eminent figure in the field of genetic counselling, both nationally and internationally. She has been instrumental in developing genetic counselling policy and education, having co-founded the World Congress on Genetic Counselling at Wellcome Connecting Science and designed the original Genomic Practice for Genetic Counsellors course. She has also co-written the core curriculum for the University of Cambridge MSt Genomic Medicine modules on ethics, genomic counselling and public engagement.

Her expertise is sought after in high-calibre forums, evidenced by her previous involvement with the World Economic Forum’s Biotechnology Council, chairing Genomics England and Sciencewise’s deliberations on the NHS’s Social Contract with patients, and her selection as the Genomics and Ethics expert for the Secretary of State for Health’s Topol review on the future of the NHS in genomics, robotics, and AI. Throughout her tenure at Wellcome Sanger Institute and Connecting Science at the Wellcome Genome Campus, and her research leadership at Cardiff University, Professor Middleton has consistently emphasised the importance of how to research engagement and dialogue. Her approach to this has involved collaboration with creative storytellers from Ridley Scott Film Productions and executives from the film, advertising and PR industries. She has actively researched public attitudes towards genomic data sharing, trustworthiness in genomics research, incidental findings from whole genome studies, testing in pregnancy for deafness, and the accessibility of genetic counselling services. She has skills in both quantitative and qualitative social sciences methods. Professor Middleton’s impact extends beyond academia into real-world policy and societal change, underscoring her dedication to an inclusive, ethically conscious, and dialogue-driven future in science. Her approach to public engagement research utilises creative techniques, embodying her belief that effective communication is both an art form and a means of shared meaning-making. This synergy between academic excellence and societal discourse, shapes an inclusive future in which science and ethics coalesce to inform and empower public and scientist appreciation of the ethical issues raised by cutting edge science.

My publications

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  • Selected
  • 2023
  • 2022
  • 2021

Genomic Diagnosis of Rare Pediatric Disease in the United Kingdom and Ireland.

Wright CF; Campbell P; Eberhardt RY; Aitken S; Perrett D; Brent S; Danecek P; Gardner EJ; Chundru VK; Lindsay SJ; Andrews K; Hampstead J; Kaplanis J; Samocha KE; Middleton A; Foreman J; Hobson RJ; Parker MJ; Martin HC; FitzPatrick DR; Hurles ME; Firth HV;

The New England journal of medicine 2023;388;17;1559-1571

Pediatric disorders include a range of highly penetrant, genetically heterogeneous conditions amenable to genomewide diagnostic approaches. Finding a molecular diagnosis is challenging but can have profound lifelong benefits.

Public engagement with genomics.

Middleton A; Adams A; Aidid H; Atutornu J; Boraschi D; Borra J; Bircan T; Burch C; Costa A; Dickinson A; Enticknap A; Galloway C; Gale F; Garlick E; Haydon E; Henriques S; Mitchell M; Milne R; Monaghan J; Morley KI; Muella Santos M; Olivares Boldu L; Olumogba F; Orviss K; Parry V; Patch C; Robarts L; Shingles S; Smidt C; Tomlin B; Parkinson S

Wellcome open research 2023;8;310

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are oftenunsure of the relevance to their lives and rarely talk to their family and friends about; we term this dis-connection a 'disengaged public audience'. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.

Scope of professional roles for genetic counsellors and clinical geneticists in the United Kingdom : Position on behalf of the Association of Genetic Nurses and Counsellors and the Clinical Genetics Society.

Middleton A; Taverner N; Houghton C; Smithson S; Balasubramanian M; Elmslie F

European journal of human genetics : EJHG 2023;31;1;9-12

This document is written on behalf of the two professional bodies in the United Kingdom that represent genetic counsellors (the Association of Genetic Nurses and Counsellors) and clinical geneticists (the Clinical Genetics Society) and aims to support multidisciplinary working of these professional groups highlighting within a quick-reference format, areas of shared practice and the distinctions between role profiles for a Consultant Clinical Geneticist, Principal/Consultant Genetic Counsellor and the new support role that we have termed 'Genomic Associate', see AGNC career structure [1]. This builds on published documents that articulate the scope of practice of the clinical genetics workforce [2] and specifically the genetic counsellor [3] and clinical geneticist [4] roles.

The genetic counsellor role in the United Kingdom : Position on behalf of the Association of Genetic Nurses and Counsellors (AGNC), Endorsed by the Genetic Counsellor Registration Board (GCRB) and Academy for Healthcare Science (AHCS).

Middleton A; Taverner N; Moreton N; Rizzo R; Houghton C; Watt C; Horton E; Levene S; Leonard P; Melville A; Ellis S; Tripathi V; Patch C; Jenkins E

European journal of human genetics : EJHG 2023;31;1;13-15

What Difference Can Public Engagement in Genome Editing Make, and for Whom?

Milne R; Aidid U; Atutornu J; Bircan T; Boraschi D; Costa A; Henriques S; Patch C; Middleton A

The American journal of bioethics : AJOB 2023;23;7;58-60

A public backlash towards genomics is a risk all of us working in genomics must share.

Middleton A; Parry V; Borra J; Orviss K

The Lancet regional health. Europe 2022;15;100347

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries.

Milne R; Morley KI; Almarri MA; Atutornu J; Baranova EE; Bevan P; Cerezo M; Cong Y; Costa A; Feijao C; de Freitas C; Fernow J; Goodhand P; Hasan Q; Hibino A; Houeland G; Howard HC; Hussain Sheikh Z; Malmgren CI; Izhevskaya VL; Jędrzejak A; Jinhong C; Kimura M; Kleiderman E; Liu K; Mascalzoni D; Mendes Á; Minari J; Nicol D; Niemiec E; Patch C; Prainsack B; Rivière M; Robarts L; Roberts J; Romano V; Sheerah HA; Smith J; Soulier A; Steed C; Stefànsdóttir V; Tandre C; Thorogood A; Voigt TH; Wang N; Yoshizawa G; Middleton A

Genetics in medicine : official journal of the American College of Medical Genetics 2022;24;5;1120-1129

The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally.

Towards equitable and trustworthy genomics research.

Atutornu J; Milne R; Costa A; Patch C; Middleton A

EBioMedicine 2022;76;103879

The representation of traditionally scientifically underserved groups in genomic research continues to be low despite concerns about equity and social justice and the scientific and clinical need. Among the factors that account for this are a lack of trust in the research community and limited diversity in this community. The success of the multiple initiatives that aim to improve representation relies on the willingness of underrepresented populations to make data and samples available for research and clinical use. In this narrative review, we propose that this requires building trust, and set out four approaches to demonstrating trustworthiness, including increasing diversity in the research workforce, and meaningful engagement with underrepresented communities in a culturally and linguistically appropriate manner. Capacity building globally will ensure that actual and perceived exploitation and 'helicopter' research could be eliminated.

Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.

Murtagh MJ; Machirori M; Gaff CL; Blell MT; de Vries J; Doerr M; Dove ES; Duncanson A; Hastings Ward J; Hendricks-Sturrup R; Ho CWL; Johns A; Joly Y; Kato K; Katsui K; Kumuthini J; Maleady-Crowe F; Middleton A; Milne R; Minion JT; Matshaba M; Mulrine S; Patch C; Ryan R; Viney W

Wellcome open research 2021;6;311

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.