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.

Michael Parker is Professor of Bioethics and Director of the Ethox Centre at the University of Oxford. His main research interest is in the ethics of collaborative global health research. Together with partners at the Wellcome Trust Major Overseas Programmes (MOPs) in Vietnam, Malawi, Thailand, Laos, Kenya, and South Africa he co-ordinates the Global Health Bioethics Network, which is a programme to encourage and promote ethical reflection, carry out ethics research, and build ethics capacity across the MOPs. Michael also leads the ethics programme of the Malaria Genomic Epidemiology Network (MalariaGEN), which carries out genomic research into severe malaria in childhood at 24 sites in 21 countries.

Michael’s other main research interest is in the ethical aspects of the clinical use of genetics. Since 2001, with Anneke Lucassen, Tara Clancy, and Angus Clarke he has co-ordinated the Genethics Club, a national ethics forum for health professionals and genetics laboratory staff in the United Kingdom to discuss the ethical issues arising in their day-to-day practice and to share good practice. This work has been published as Ethical Problems and Genetics Practice (Cambridge University Press, 2012).

Professor Richard Ashcroft teaches medical law and ethics at both undergraduate and postgraduate level in the Department of Law at Queen Mary University of London.

He is working on the role of human rights theory, law and practice in bioethics policy, and on ethical challenges in public health. He has a longstanding interest in biomedical research ethics.

Alasdair Breckenridge was Chairman of the Medicines and Healthcare products Regulatory Agency. Previously he was Chairman of the Committee on Safety of Medicines and Professor of Clinical Pharmacology in the University of Liverpool.

He joined the Trust Board of University College London Hospitals (UCLH) as a Non-Executive Director in November 2012. He is also Chairman of the Board of the Centre of Regulatory Excellence of the Government of Singapore, and an Expert Consultant at NDA Partners LLC.

Alasdair Breckenridge was knighted in 2004.

Angus is a Clinical Professor, Institute of Cancer & Genetics at the University of Cardiff. 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)

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.

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 is the Director of Genetic Alliance UK – the national charity of over 180 patient organisations, supporting all those affected by genetic conditions. Genetic Alliance UK’s mission is to promote the development of the scientific understanding of genetics and the part that genetic factors play in health and disease, and to see the speedy transfer of this new knowledge into improved services and support for patients.

Alastair is also the Chair of Rare Disease UK (RDUK) the national alliance for people with rare diseases and all who support them. RDUK has over 1,500 members including over 250 patient organisations, health professionals, researchers, the pharmaceutical industry and individual patients and families.

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.

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.

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 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.

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.

Share thisShare on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInEmail this to someone