Ethics Advisory Committee
Our independent Ethics Advisory Committee identifies, defines, examines and responds to ethical issues in the 100,000 Genomes Project. They also help to ensure the Project is delivered in the interests of the public and of participants.
They provide timely advice, guidance, review and recommendations on ethical issues, as requested by the Board.
Professor Michael Parker – Chair
University of Oxford
Michael Parker is Professor of Bioethics at the University of Oxford, and Director of the Wellcome Centre for Ethics and Humanities and the Ethox Centre. His main research interests are in the ethical issues arising in the clinical and research uses of genomics and data-science, and in the ethical aspects of collaborative global health research. Together with partners at the Wellcome Africa and Asia Programmes in Kenya, Malawi, South Africa, Thailand, and Vietnam, he co-ordinates the Global Health Bioethics Network. Michael is a non-executive director of Genomics England and Chair of its Ethics Advisory Committee, and an ethics advisor to UK Biobank. Since 2001, together with colleagues in genomic medicine, Michael established the Genethics Forum: the UK’s national ethics forum for health professionals and researchers to address practical ethical problems arising in their day-to-day practice. In 2018-19, Michael chaired a Nuffield Council on Bioethics Working Group on the ethical aspects of research in global health emergencies.
Dr Nadeem Qureshi
University of Nottingham
Dr Qureshi is one of the leading experts on Primary Care Genetic in the United Kingdom. He leads an internationally recognised group that focuses on translation of genetics into clinical practice, developed in tandem with advance in the human genome project and emerging screening policies.
Professor Angus Clarke
Angus is a Clinical Professor, Institute of Cancer & Genetics at Cardiff University. He has contributed substantially to the clinical genetics community in Britain and more widely over the past two decades. These contributions include:
• Board of the European Society of Human Genetics.
• Represented Chief Medical Officer, Wales on Emerging Science and Bioethics Committee 2012-2014
• Council of the British Society of Genetic Medicine 2012-2014
• Member of Human Genetics Commission (2004-2012)
Dr Sarah Chan
Usher Institute for Population Health Sciences and Informatics and University of Edinburgh
Sarah Chan is a Chancellor’s Fellow working in interdisciplinary bioethics at the Usher Institute for Population Health Sciences and Informatics, and Co-Director of the Mason Institute for Medicine, Life Sciences and Law, University of Edinburgh. Previously, from 2005 to 2015, she was a Research Fellow in Bioethics at the University of Manchester, first at the Centre for Social Ethics and Policy and from 2008 the Institute for Science Ethics and Innovation. Sarah’s research focuses on the ethics of new biomedical technologies, including stem cell and embryo research; reproductive medicine; synthetic biology; gene therapy and genetic modification; and human and animal enhancement. Her current work draws on these interests to explore the ethics of emerging modes of biomedicine at the interface of health care research, medical treatment and consumer medicine including population-level health and genetic data research; the use of biomaterials in both research and treatment; and access to experimental treatments and medical innovation.
Cancer Research UK
Anne Croudass is a Lead Research Nurse at Cancer Research UK.
She manages, mentors, supports and inspires Cancer Research UK Senior Nurses at 15 cancer centres across the UK. Her team are always grateful for her enthusiasm for the contribution of research nurses to the research agenda in the UK but also for her positivity and humour that seem to put the challenges of clinical research into perspective and the work a little bit more fun.
Professor Bobbie Farsides
Brighton and Sussex Medical School and University of Sussex
Bobbie Farsides is Professor of Clinical and Biomedical Ethics at Brighton and Sussex Medical School.
She has been researching and teaching in the field of bioethics for over twenty years, and her research focuses on the experience of health care professionals and scientists operating in ethically contested fields of biomedicine. Bobbie also has a strong commitment to public policy work and serves on a number of committees including the UK Donation Ethics Committee. Research ethics has been a constant interest throughout her career including practically focused work in the developing world context. She recently chaired the Nuffield Council on Bioethics working party on Children’s Participation in research and she chairs the Wellcome Trust’s Ethics and Society Interview panel.
Alastair Kent OBE
Consultant in Health Policy and Patient Engagement in Rare and Genetic Diseases
Alastair Kent was the executive director of Genetic Alliance UK (GA-UK) the national alliance of over 200 patients support organisations helping those with rare and genetic disorders for almost 25 years. He founded and chaired Rare Disease UK, the campaign managed by GA-UK until January 2018. In April 2017 he stepped back from this to take on a new role for the organisation, namely that of Ambassador, promoting awareness of the needs and expectations of all those affected or at risk from rare and genetic conditions. He retired from Genetic Alliance UK at the end of April 2018, but remains active in the field, working as an independent consultant.
Alastair was made OBE for services to healthcare in 2011. In 2017 he became a Fellow of the Royal Society of Arts for his work on behalf of genetic patients and families, and was named Healthcare Advocate of the Year at the Communique Awards ceremony. In 2018 he received a lifetime achievement award from Eurordis, the European organisation for rare diseases.
Professor Anneke Lucassen
University of Southampton
Anneke Lucassen is Professor of Clinical Genetics within the Faculty of Medicine at the University of Southampton and Consultant in Clinical Genetics at the Wessex regional Genetic service. She combines key clinical, laboratory and ethico-legal expertise to research developments in genetic medicine and to effect improved delivery of genomic services to individuals and families. She leads the Clinical Ethics and Law at Southampton (CELS) multidisciplinary research group that explores ethical and legal issues in health care practice through conceptual and empirical research, innovative teaching, and public dialogue. Current research is focused on addressing the integration of rapid developments in genomic technologies into clinical practice and society; For example, the extent to which genomic information needs to be viewed at the familial rather than individual level; issues arising from the discovery of incidental findings from genomic tests as well as the ethical questions raised by the introduction of pre-conception and pre-natal testing.
Through CELS research, contributions to undergraduate and postgraduate education, and public engagement activities, she provides a translational pipeline for healthcare relevant ethics and law.
Richard is a survivor of two cancers, Hodgkin’s Lymphoma and basal cell carcinoma. He has been a participant in four clinical trials himself, and several observational, psycho-social and quality of life studies.
Richard is Chair of NCRI’s Consumer Forum and the NCRI Consumer Lead. He also serves on strategic groups for NIHR, NCIN and others. He was the patient representative on the Independent Cancer Taskforce that produced the 2015 Cancer Strategy for England, Achieving World Class Cancer Outcomes.
Richard is one of the consumers who designed and introduced the questions on research awareness and participation for the National Cancer Patient Experience Survey. He supplied the slogan “It’s OK To Ask” for the UK-wide initiative promoting clinical research, including data-sharing. He is a founding member both of the AllTrials campaign, calling for greater transparency in clinical trial registration and reporting, and of the useMYdata movement, supporting the safeguarded sharing of data for ethically-approved medical research.
Dr Mark Taylor
Sheffield Institute for Biotechnology Law and Ethics and University of Sheffield
Dr Mark Taylor is Deputy Director of the Sheffield Institute of Biotechnology Law and Ethics (SIBLE) and a Senior Lecturer in the School of Law, University of Sheffield. He specialises in health information law, privacy, and legal and ethical conceptions of the public interest. He is a mid-career Fellow of the British Academy, Chair of the Confidentiality Advisory Group (CAG) for the Health Research Authority, a member of the Ethics, Regulation & Public Involvement Committee (ERPIC) for the Medical Research Council, and a member of the National Data Guardian’s Panel.
Dr Ron Zimmern
Ron Zimmern created the original Public Health Genetics Unit in 1997 and its successor the PHG Foundation in 2007. He stood down as chief executive in September 2009 to become Chairman of the Foundation’s Board of Trustees, where his role is in governance and strategic development.
Ron has enjoyed a distinguished career in medicine, public health and policy, and is the pioneer of public health genomics in the UK. He was Founding Chairman of GRAPH-Int, the public health genomics international network, until 2010 and continues to be active in an international leadership role, working closely with colleagues and institutions around the world, including in the USA, Canada, Europe and Hong Kong.
Professor Penney Lewis
King’s College London
Dr Anneke Seller
Health Education England
Participant Panel representative
Shelley is enrolled in the 100,000 Genomes Project as the mother of her son, Fraser. Unlike most other participants, Fraser already had a diagnosis prior to enrolling – the family were told when he was a young baby that he has Duchenne muscular dystrophy, a genetic muscle-wasting condition causing life-long disability. However, Fraser has been far from a typical textbook presentation of his condition, leading his healthcare professionals to believe that he has another genetic condition alongside having Duchenne – it is the hope that the Project will find the answer.
Shelley is a passionate advocate and campaigner for rare disease and disability rights, with a strong desire to better educate others about inclusion, accessibility and equality. Having been the recipient of a life-changing diagnosis for her son, she also has an interest in how healthcare results are communicated to patients and ensuring patient well-being and understanding is at the forefront of all scientific and genomic research.
By day, Shelley works as a Company Secretary in London, with a professional background in governance, operations and HR. Shelley is also a Trustee of Disability Rights UK.