Research Ethics and Governance
Research Ethics and Governance
Overview
Our reflection on research ethics is informed by our work in continuing professional development and training of practitioners.
We have a fundamental interest in scrutinising the ethics of research: knowledge production, organisation, and use.
We reflect on the practices and discourses of doing biomedicine, biotechnology and bioethics research ethically. We evaluate how ethics and governance frameworks understand and address the needs of contemporary research and applications.
Our researchers are also frequently called on to support the ethical aspects of research projects and networks, either as formal collaborators or in an advisory/consultative capacity.
Read about our projects and publications within this theme.
Projects
Find out what projects we've been involved in.
Projects
Adults lacking capacity in research: The experience of using consultees in the context of time critical research, 2012
Supported by the National Research Ethics Service
Principal Investigator: Simon Woods, with Andrew Padkin and Lorna Burrows
MetalHip: Using patient experiences to improve medical engineering design, 2011-2012
Funding: EPSRC, £25,000
Principal Investigator: Dr Tom Joyce, School of Mechanical and Systems Engineering, with PEALS Research Associate Pauline McCormack
Read more about this project.
Research Designs: living with Duchenne Muscular Dystrophy, 2009-2013
Funding: ESRC collaborative studentship with TREAT-NMD
PhD Student: Sarah Skyrme
Academic supervisors: Janice McLaughlin and Simon Woods
Developmental Gene Expression Map (DGEMap), 2005-2007
Funding: EU Commission, £94,419 to PEALS
Work Package Leader: Simon Woods
Principal Investigator: Susan Lindsay, Institute of Genetic Medicine
Read more about this project.
Funding an independent research nurse to avoid conflict of interest between clinical treatment and research, 2003
Funding: Medical Research Council, £56,602 to PEALS
Principal Investigator: Alison Murdoch, with Marilyn Strachan and Erica Haimes
A comparative study in participation and non-participation in the North Cumbria Community Genetics Project, 2001-03
Funding: Wellcome Trust, £72,334 to PEALS
Principal Investigator: Erica Haimes
Read more about this project.
Publications
Find out about some of our publications for this theme.
Publications
Our latest publications in this area include:
Minion, J.T., Butcher, F., Timpson, N. and Murtagh, M.J., 2018. The ethics conundrum in Recall by Genotype (RbG) research: perspectives from birth cohort participants. PloS one, 13(8), p.e0202502.
Murtagh, M.J., Blell, M.T., Butters, O.W., Cowley, L., Dove, E.S., Goodman, A., Griggs, R.L., Hall, A., Hallowell, N., Kumari, M. and Mangino, M., 2018. Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure. Human genomics, 12(1), p.24.
Skyrme SL, Woods S. Researching disabled children and young people’s views on decision-making: Working reflexively to rethink vulnerability. Childhood 2018, e-pub ahead of print.
Wienroth M. Socio-technical disagreements as ethical fora. Parabon NanoLab’s forensic DNA SnapshotTM service at the intersection of discourses around robust science, technology validation, and commerce. BioSocieties 2018, (ePub ahead of Print).
Wienroth M. Governing anticipatory technology practices. Forensic DNA phenotyping and the forensic genetics community in Europe. New Genetics and Society 2018, 37(2), 137-152.
Gainotti S, Turner C, Woods S, Kole A, McCormack P, Lochmüller H, Riess O, Straub V, Posada M, Taruscio D, Mascalzoni D. Improving the informed consent process in international collaborative rare disease research: Effective consent for effective research. European Journal of Human Genetics 2016, 1–7.
Hansson MG, Lochmuller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins H, Taruscio D, Posada M, Woods S. The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics 2016, 24(11), 1553-1558.
McCormack P, Kole A, Gainotti S, Mascalzoni D, Molster C, Lochmüller H, Woods S. 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research. European Journal of Human Genetics 2016, 30.
McCormack P, Woods S. New recommendation on biological materials could hamper muscular dystrophy research. PLoS Currents 2016, 8 (MuscularDystrophy).
Woods S. Big Data Governance: Solidarity and the Patient Voice. In: Floridi, L; Mittelstadt, B, ed. The Ethics of Biomedical Big Data. Dordrecht: Springer International Publishing, 2016, pp.221-238.
Woods S. Involving adults who lack capacity in research: ethical and legal challenges for the pre-hospital and emergency medicine context. Journal of Paramedic Practice 2016, 8(10), 499-505.
Mascalzoni D, Dove E, Rubinstein Y, Dawkins H, Kole A, McCormack P, Woods S, Riess O, Schaefer F, Lochmüller H, Knoppers B, Hansson M. International Charter of principles for sharing bio-specimens and data. European Journal of Human Genetics 2015, 23(6), 721-728.
Woods S, Hagger LE, McCormack P. Therapeutic Misconception: Hope, Trust and Misconception in Paediatric Research. Health Care Analysis 2014, 22(1), 3-21.
McCormack P, Woods S. Disputing the ethics of research: the challenge from bioethics and patient activism to the interpretation of the Declaration of Helsinki in clinical trials. Bioethics, Volume 27 Number 5 2012 pp. 243-250
Woods S, Hagger LE, McCormack P. Therapeutic misconception: hope, trust and misconception in translational research for rare disease. 2011
Barr M, Zhang JY. Bioethics and Biosecurity Education in China: Rise of a Scientific Superpower. In: Rappert, B, ed. Education and Ethics in the Life Sciences: Strengthening the Prohibition of Biological Weapons. Canberra: Australian National University Press, 2010, pp. 115-129