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Brighton & Sussex Medical School

EPPiGen

EPPiGen

EPPiGen – The Ethical Preparedness in Genomic Medicine project – is a Wellcome Trust Collaborative Award in Humanities and Social Science (2017-2022) grant number G2330 £1.2M.

The project is an interdisciplinary collaboration between BSMS and the University of Southampton’s Centre for Clinical Ethics and Law (CELS). The project will employ empirical and conceptual analysis to provide a rich and nuanced account of the ethical issues relating to genetic and genomic interventions within the NHS. The team will focus on the preparedness of those delivering and receiving the service to deal with the ethical issues raised. 

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About EPPiGen

Bringing together scholars with established and complementary experience of researching the social and ethical implications of emerging technologies, the project aims: 

  1. To develop a robust and effective concept of ethical preparedness
  2. To engage practitioners, policymakers and patients in the field of genomic medicine with the concept of ethical preparedness, and to encourage further conceptual analysis and critique of the concept within bioethics
  3. To adopt a range of qualitative methodologies to capture and assess current levels of ethical preparedness 
  4. To identify and analyse the issues that undermine ethical preparedness
  5. To engage professionals in a process of co-research and co-production through a shared Genethics Forum
  6. To translate the findings into future genomic practice and policy.
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Why ethical preparedness?

Over a long period of time researchers at BSMS have been interested in the experience of health care professionals and medical scientists operating in what has been called ‘ethically contested areas.' Across a series of projects funded by the Wellcome Trust, ESRC and NIHR work has focussed on areas such as stem cell medicine, fetal medicine, antenatal screening and testing, embryo research and organ donation. In the field of Global Health BSMS researchers have a long-standing interest in what is entailed in preparing researchers and communities to work together conducting medical research in resource-poor settings. 

In the course of this research, it has become clear that speaking to practitioners about the ethical challenges of their work often awakes in them a desire to become more prepared in future. Unfortunately, the reverse of this is sometimes the expression of regret that they were not sufficiently prepared for the challenges of new technologies and/or therapeutic options bring with them.

At the same time, bioethics as a discipline attempts to keep one step ahead of the science anticipating the ethical issues often long before something arrives in the clinical setting. However, there is a potential for a theory-practice gap such that the things bioethicists worry about might not travel into the clinical setting or when they do they may be revealed as not being the same things practitioners are worried about. 

This project will attempt to construct an understanding of ethical preparedness which draws upon empirical and theoretical bioethics practice in the interests of serving practitioners and ultimately patients. Using genomics as a timely case study the various work packages will contribute in different ways to building this concept into something which could be useful in this and many other settings. 

Our hypothesis is that in order to facilitate ethical preparedness in the context of clinical practice there needs to be a significant and effective cross-fertilisation of ideas between those who are ‘doing the work', those for whom the work is being done, and those who theorise or conceptualise about it.  In turn, there needs to be a clear line of communication between these groups and those charged with creating policy and guidance, understanding of course that all these groups may well overlap in terms of membership.

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Why genetics and genomics?

To support our claim that such work is needed in the area of genomics, we start with the premise that achieving the benefits promised by genomics will require significant changes in the ways in which healthcare is understood, organised and practised such as:

  1. The need for a greater degree of integration of, and complementarity between, healthcare, medical research and innovation than is currently routine. 
  2. The need for large-scale collection, storage and appropriate sharing of information, across traditional boundaries (both geographical and familial) posing new challenges for practice.
  3. The acknowledgement that a faster pace of change and learning in genomics than in many other areas of medicine will require staff to deal with a greater degree of uncertainty, open-endedness and future proofing and to adapt healthcare relationships accordingly.   

Our preliminary research, and our activities on national bodies involved in the design and delivery of 100,000 Genome Project and now the mainstreaming of genomics within the NHS (for example, Genomics England Ethics Advisory Committee and the British Society of Genetic Medicine), has reinforced our belief in the need for a good degree of ethical preparedness.  

In Brighton, we will be interested to examine the experiences of professionals coping with the introduction of genomic tools into their everyday practice. We wish to observe how they deal with ethical challenges for which their training may have given little preparation, and where professional guidelines are sometimes seen as unclear or legally ambiguous.  

As well as working with NHS staff we believe that an important component of our analysis will require concurrent research into the experience of patients and participants in genomic medicine and research. Our claim is that any bid to promote or improve ethical preparedness will benefit from health professionals having access to a detailed understanding of what it means to be part of a genomic project from a patient perspective and how those people live their everyday lives outside the health care setting. Although ‘genomics patients’ may have very different illness experiences and treatment trajectories, what they will share is the experience of being patient/research participants in a context that is inextricably bound up with that of their genetically significant others.

Southampton team

Further information about the wider CELS team > 


External collaborators
 

Dr Mark Bale, Head of Science Partnerships, Genomics England

Prof Angus ClarkeProfessor of Clinical Genetics, Institute of Medical Genetics, Division of Cancer & Genetics, School of Medicine, Cardiff University

Prof Heather DraperProfessor of Bioethics, Warwick Medical School University of Warwick

Dr Nina HallowellAssociate Professor, Wellcome Centre for Ethics and Humanities and Ethox Centre, Nuffield Department of Population Health, University of Oxford

Dr Jeantine E. Lunshof, Philosopher, Ethics, Research Scientist, MIT Media Lab, Cambridge, USA. Consultant Department of Genetics - Church lab, Harvard Medical School. Assistant Professor, University of Groningen, The Netherlands

Prof Jonathan MontgomeryProfessor of Healthcare Law University College London

Dr Ainsley NewsonAssociate Professor of Bioethics and Deputy Director at Sydney Health Ethics, University of Sydney, Australia

Prof Michael ParkerDirector of The Wellcome Centre For Ethics and Humanities, and The Ethox Centre, University of Oxford

Prof Bronwyn ParryProfessor of Global Health and Social Medicine, Department of Global Health and Social Medicine, Kings College London

Prof Chantal SimonVisiting Professor, University of Westminster, Medical Director for Professional Development, Royal College of General Practitioners, Programme Lead, Dorset Physician's Associate School, University of Bournemouth

Prof Philip Stratton-LakeProf of Moral Philosophy, University of Reading

Prof Steve SturdyProfessor of Sociology of Medical Knowledge, University of Edinburgh

Dr Irene van LangenProfessor of Clinical Genetics, University Medical Centre, Department of Genetics, University of Groningen, The Netherlands

Prof Marian VerkerkProfessor of Ethics of Care, Faculty of Medical Sciences, University of Groningen, The Netherlands

Prof Clare Williams, Honorary Professor of Medical Sociology, Dept of Social Sciences, Media & Communications, Brunel University London 

Katharine WrightAssistant Director, Nuffield Council on Bioethics

Research repository

Devlin Hannah (2019) Senior doctors call for crackdown on home genetic testing kits: False results have told women they have mutations linked to breast and ovarian cancer, The Guardian 21st July 2019

Genetic Alliance and Genomic England (2019) GENOME SEQUENCING AND THE NHS: The views of rare disease patients and carers  Accessed on 19th July 2019

Ipsos MORI (2019) Report A public dialogue on genomic medicine: time for a new social contract?

House of Commons Science and Technology Committee (Third Report of Session 2017–19) Genomics and Genome Editing in the NHS

Dheensa S, Samuel, G. Lucassen A & Farsides, B (2018) Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100,000 genomes project

Samuel, G. N. & Farsides, B. (2017) Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project

Samuel, G. N. & Farsides, B. (2017) Genomics England’s implementation of its public engagement strategy: blurred boundaries between engagement for the UK’s 100,000 Genomes Project and the need for public support

Samuel, G. N. Dheensa, S, Farsides B, Fenwick, A & Lucassen A  (2017) Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach

Samuel, G. N. & Farsides, B. (2017) The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations

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