Children and clinical research: ethical issues

Bobbie Farsides (Chair)

Bobbie 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.

Joe Brierley

Joe is a Consultant in Paediatric and Neonatal Intensive Care at Great Ormond Street Hospital, where he is the lead clinician for end of life issues, and also for ethics and law research. He chairs the Bloomsbury Local Research Ethics Committee, is vice chair of Great Ormond Street’s clinical ethics committee, and is a member of the Ethics and Law Advisory Committee of the Royal College of Paediatrics and Child Health. He also teaches and publishes on paediatric research ethics. His family, which includes a daughter with complex health issues, have participated in both quantitative and qualitative research studies.

Imelda Coyne

Imedla is Professor of Children’s Nursing at Trinity College Dublin, Ireland. Her research examines family-centred care practices, and children and young people’s participation in healthcare decision-making. Projects include: interventions for shared decision-making; adolescents’ transition to adult health services; quality of healthcare provision for children and families; and child and adolescent experiences of mental health services. She is a member of the Research Development Advisory Group and the Thematic Policy Group (called ‘Children’s voices will be heard’) at the Department for Children and Youth Affairs (DCYA), Ireland.

Elizabeth Davis

Elizabeth is currently working as a Paediatric Research Nurse at The Oxford Vaccine Group, which she joined in 2008, and also as a Community Staff Nurse with the School Health Nurses. Previously she worked as a staff nurse at the John Radcliffe hospital in paediatric intensive care, and with adolescents. She also teaches yoga in schools, and at CHIVA (Children with HIV association) summercamp, as a means of balancing the body, building self esteem and quietening the mind.

Sara Fovargue

Sara is a Senior Lecturer in Law at Lancaster University specialising in health care law and ethics. Her research largely centres around the legal and ethical issues raised by biotechnology and reproduction, and she is particularly interested in xenotransplantation. Themes within her work include autonomy, risk, regulation, and the relationship between law and ethics. Her research explores legal and ethical aspects of clinical research, regulation and risk, and she is interested in decision making processes and practices with regard to the ‘vulnerable’.

Robin Gill

Robin is Professor of Applied Theology at the University of Kent. He was Chair of the Archbishop of Canterbury’s Medical Ethics Advisory Committee 1993-2006. He has published a number of books on theological aspects of bioethics including Christian ethics and values, health care and genetics.

Roland Jackson

Roland is Executive Chair of Sciencewise and Chair of the Bioscience for Society Strategy Panel for the Biotechnology and Biological Sciences Research Council (BBSRC). He has a particular interest in science policy and in public involvement with research.

Vicki Marsh (‘jobshare’ with Sassy Molyneux)

Vicki is a senior social science and public health researcher in the Kenya Medical Research Institute (KEMRI)-Wellcome Trust Research Programme in Kenya, based in the Health Systems Research Department. She is also a University Research Lecturer in the Nuffield Department of Medicine, and Research Associate at the Ethox Centre, Nuffield Department of Population Health, Oxford University. Trained in Medicine and General Practice in the UK, she has worked in Kenya since 1990, including as a paediatric Medical Officer in Kilifi District General Hospital, with the Kenya National Malaria Control Programme on the role of village shopkeepers, and on health research ethics. Her current research interests concern understanding and strengthening policy around social and ethical aspects of international collaborative health research in low-income settings, including community engagement and deliberative forms of community consultation.

Sassy Molyneux (‘job-share’ with Vicki Marsh)

Sassy is a senior social scientist based at the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya. She currently co-chairs the Health Systems Research Department. She is also a University Research Lecturer in the Nuffield Department of Medicine, and Research Associate at the Ethox Centre, Nuffield Department of Population Health, Oxford University. Her research work has focused on two main areas: the interface between health systems and households (including exploring household treatment seeking behaviour, gender relations and affordability of health care); and the interface between health researchers and communities (including informed consent, community engagement, payments and benefits for research participants and communities, and social science ethics). Her current main focus is on accountability: producing new thinking, evidence and recommendations around strengthening community involvement and internal accountability in biomedical research and health delivery in sub-Saharan Africa.

Helen Sammons

Helen is a General Paediatrician (Derbyshire Children’s Hospital) and Associate Professor of Child Health at the University of Nottingham. She is a qualified Paediatric Clinical Pharmacologist with research interests around safe and effective use of children’s medicines. Her interest in ethics have led to her being vice chair of the Derby NRES Ethics Committee and she has conducted research around why parents consent for their children to take part in clinical trials, and on physician viewpoints on key ethical issues. She is part of the ethical review boards for two major European projects, leading the ethics work package for the Treatment of Infection in Neonates (TINN) consortium projects, and a member of the ethics board for the ASTRO LAB project examining safety of asthma treatment in adults and children.

Mark Sheehan

Mark is Oxford NIHR Biomedical Research Centre Ethics Fellow at the Ethox Centre and a Research Fellow at the Uehiro Centre for Practical Ethics, University of Oxford. He currently serves as a National Research Ethics Advisor for the National Research Ethics Service, and has been a member of the NHS Advisory Group for National Specialised Services (AGNSS) and vice-chair of the Thames Valley Priorities Forum for the South Central Strategic Health Authority. He also sits on the University of Oxford’s Social Sciences and Humanities Inter-Divisional Research Ethics Committee. He is Associate Editor of the Journal of Medical Ethics and is a Senior Research Fellow in Philosophy at St. Benet’s Hall, University of Oxford.

Susan Tansey

Susan is Medical Director (Paediatrics) at Premier Research Group Limited. She trained as a paediatrician in the NHS before joining the pharmaceutical industry in 1998. She has since worked for various companies, including several years at Pfizer (formerly Wyeth) designing and conducting global paediatric vaccine trials. Susan is a Consultant Pharmaceutical Physician, a Member of the Royal College of Paediatrics and Child Health (RCPCH), and a Fellow of the Faculty of Pharmaceutical Medicine (FPM). She currently holds the position of Associate Director for Industry for the Medicines for Children Network in the UK and sits on the RCPCH/Neonatal and Paediatric Pharmacists Group (NPPG) as the FPM Observer.

Marc Taylor

Marc is Chair of ISRCTN, a not-for-profit organisation that manages the unique identification of randomised controlled trials worldwide, Vice Chair of the UK Research Integrity Office, and member of the Health Research Authority’s Confidentiality Advisory Group. Until 2011, he was head of R&D Systems and Governance in the Department of Health’s Research and Development Directorate, and was the lead official for research governance, including national policy on the NHS Research Ethics Committee system and the UK Ethics Committee Authority. He has a background in NHS finance policy and in overseas development.

Bridget Young

Bridget is Professor of Psychology at the University of Liverpool. Her research investigates psychological and communicative processes in health care and clinical research. Her recent published work has focused on communication in the clinical care of patients with cancer and stakeholder experiences of clinical trials. She is co-lead for the Patient Perspectives Theme of the Medical Research Council North West Hub for Trials Methodology Research. She also has responsibility for the clinical communication education of medical and dental students at the University of Liverpool.