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Acting on incidental findings in research imaging

BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h5190 (Published 10 November 2015) Cite this as: BMJ 2015;351:h5190
  1. J M Wardlaw, professor of applied neuroimaging and honorary consultant neuroradiologist1,
  2. H Davies, research ethics adviser2,
  3. T C Booth, consultant neuroradiologist3,
  4. G Laurie, professor of medical jurisprudence4,
  5. A Compston, professor of neurology5,
  6. C Freeman, professor of psychiatry and clinical lead for accreditation6,
  7. M O Leach, professor of physics as applied to medicine7,
  8. A D Waldman, consultant neuroradiologist and research director for imaging8,
  9. D J Lomas, professor of clinical MRI9,
  10. K Kessler, professor of cognitive neuroscience10,
  11. F Crabbe, senior research radiographer11,
  12. A Jackson, professor of radiology12
  1. 1Division of Neuroimaging Sciences, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh EH16 4SB, UK
  2. 2Health Research Authority, Skipton House, London
  3. 3Department of Neuroradiology, King’s College Hospital NHS Foundation Trust, Denmark Hill, London
  4. 4JK Mason Institute for Medicine, Life Sciences and the Law, School of Law, University of Edinburgh
  5. 5Department of Clinical Neurosciences, University of Cambridge
  6. 6College Centre for Quality Improvement, Royal College of Psychiatrists, London
  7. 7Cancer Research UK Cancer Imaging Centre, Institute of Cancer Research and Royal Marsden Hospital, London
  8. 8Department of Imaging, Imperial College London
  9. 9Department of Radiology, University of Cambridge and Addenbrooke’s Hospital, Cambridge Biomedical Campus
  10. 10Aston Brain Centre, School of Life and Health Sciences, Aston University, Birmingham
  11. 11Institute of Neuroscience and Psychology, University of Glasgow
  12. 12Wolfson Molecular Imaging Centre, University of Manchester
  1. Correspondence to: J M Wardlaw joanna.wardlaw{at}ed.ac.uk
  • Accepted 25 September 2015

Incidental findings of imaging research studies can turn healthy individuals into anxious patients, while putting an extra burden on primary care. J M Wardlaw and colleagues argue that doctors should ensure that the personal, ethical, healthcare, and cost implications of these common findings are managed proportionately, sensitively, and economically

Medical imaging is commonly used in research and can lead to major medical advances. However, it can also detect incidental findings of “potential health importance, unknown to the participant, unrelated to the purpose, and beyond the aims of the research.”1 2 Detecting incidental findings may be lifesaving or may cause distress and uncertainty and affect livelihood. Incidental findings increase the already high workloads of general practitioners and hospital specialists.3 4 They have immediate and emotive impact: participants know that the researcher sees the images during scanning, so they expect that incidental findings will be acted on, even when told otherwise.5

Researchers’ knowledge of incidental findings varies hugely.6 7 Little advice is available on what to do, despite calls for clarity and for national frameworks.8 9 10 11 12 13 Efforts to establish guidance on incidental findings by UK imaging researchers, the UK Biobank Ethics and Governance Council, the Wellcome Trust, the Medical Research Council, and the Health Research Authority put the United Kingdom ahead of other countries,14 15 16 but gaps in our knowledge remain (box 1).

Box 1: Knowledge gaps

  • Epidemiology of incidental findings with health consequences—Frequency, natural course, lifetime health, psychological and financial consequences of incidental findings, including those that are age and gender specific

  • How to manage costs—Cost effectiveness of different management strategies

  • How research participants think about incidental findings—Attitudes of a wider cross section of research participants about management

  • Better ways to inform research participants about medical and non-medical implications—Methods to …

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