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Management of Incidental Findings on Multimodal Imaging in UK Biobank

  • Lorna M. Gibson
  • Jonathan Sellors
  • Cathie L. M. Sudlow
Chapter
Part of the Medical Radiology book series (MEDRAD)

Abstract

UK Biobank is a major national health resource which aims to improve prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses. UK Biobank recruited 500,000 people aged between 40 and 69 years in 2006–2010, who underwent a range of measurements and provided detailed information about themselves, donated biological samples for future analyses and agreed to have their health followed long term. Among a range of ongoing enhancements, the UK Biobank Imaging Study aims to perform brain, cardiac and body magnetic resonance imaging, dual-energy X-ray absorptiometry and carotid Doppler ultrasound in 100,000 participants, generating the world’s largest multimodal imaging dataset.

As incidental findings (IF) are an expected consequence of its imaging study, UK Biobank developed a pragmatic, scalable protocol for handling IF, in which participants and their general practitioners receive feedback in limited circumstances: when, during image acquisition, a radiographer notices a potentially serious IF (‘indicating the possibility of a condition which, if confirmed, would carry a real prospect of seriously threatening life span or of having a substantial impact on major body functions or quality of life’) and a radiologist subsequently confirms a potentially serious IF.

UK Biobank has compared its IF protocol against a commonly used protocol (systematic review of all images by radiologists) and collected comprehensive data on the impact of feedback of potentially serious IF on participants and health services. The results will be published separately and will provide robust, empirical evidence to inform debates surrounding handling IF and designs of future studies’ IF policies.

Keywords

Incidental Finding Governance Council Real Prospect Asymptomatic Participant Consent Material 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

References

  1. Collins R (2012) What makes UK Biobank special? Lancet 379(9822):1173–1174.  http://dx.doi.org/10.1016/S0140-6736(12)60404-8 CrossRefPubMedGoogle Scholar
  2. Gibson LM, Sudlow CLM, Wardlaw J (2016) Incidental findings: current ethical debates and future challenges in advanced neuroimaging. In: Illes J, Hossain S (eds) Neuroethics: anticipating the future, 2 edn. Oxford University Press, Oxford (In Press)Google Scholar
  3. Kirschen MP, Jaworska A, Illes J (2006) Subjects’ expectations in neuroimaging research. J Magn Reson Imaging 23(2):205–209. doi: 10.1002/jmri.20499 CrossRefPubMedPubMedCentralGoogle Scholar
  4. Matthews PM, Sudlow C (2015) The UK Biobank. Brain 138(12):3463–3465. doi: 10.1093/brain/awv335 CrossRefPubMedGoogle Scholar
  5. Medical Research Council, Wellcome Trust (2014) Framework on the feedback of health-related findings in research. www.mrc.ac.uk/documents/pdf/mrc-wellcome-trust-framework-on-the-feedback-of-health-related-findings-in-researchpdf/
  6. Miller KL, Alfaro-Almagro F, Bangerter NK, Thomas DL, Yacoub E, Xu J, Bartsch AJ, Jbabdi S, Sotiropoulos SN, Andersson JLR, Griffanti L, Douaud G, Okell TW, Weale P, Dragonu I, Garratt S, Hudson S, Collins R, Jenkinson M, Matthews PM, Smith SM (2016) Multimodal population brain imaging in the UK Biobank prospective epidemiological study. Nat Neurosci 19(11):1523–1536. doi: 10.1038/nn.4393 CrossRefPubMedPubMedCentralGoogle Scholar
  7. Petersen SE, Matthews PM, Bamberg F, Bluemke DA, Francis JM, Friedrich MG, Leeson P, Nagel E, Plein S, Rademakers FE, Young AA, Garratt S, Peakman T, Sellors J, Collins R, Neubauer S (2013) Imaging in population science: cardiovascular magnetic resonance in 100,000 participants of UK Biobank - rationale, challenges and approaches. J Cardiovasc Magn Reson 15(1):46–46. doi: 10.1186/1532-429X-15-46 CrossRefPubMedPubMedCentralGoogle Scholar
  8. Sudlow C, Gallacher J, Allen N, Beral V, Burton P, Danesh J, Downey P, Elliott P, Green J, Landray M, Liu B, Matthews P, Ong G, Pell J, Silman A, Young A, Sprosen T, Peakman T, Collins R (2015) UK Biobank: an open access resource for identifying the causes of a wide range of complex diseases of middle and old age. PLoS Med 12(3):e1001779. doi: 10.1371/journal.pmed.1001779 CrossRefPubMedPubMedCentralGoogle Scholar
  9. The Royal College of Radiologists (2011) Management of incidental findings detected during research imaging. https://www.rcr.ac.uk/system/files/publication/field_publication_files/BFCR%2811%298_ethics.pdf
  10. TNS-BMRB (2015) Attitudes to and impact of the feedback of potentially serious incidental findings from UK Biobank’s imaging pilot study.Google Scholar
  11. UK Biobank (2014a) Consent form for the imaging assessment: UK Biobank. http://www.ukbiobank.ac.uk/wp-content/uploads/2016/06/consent_form_imaging.pdf
  12. UK Biobank (2014b) Information leaflet: imaging assessment visit. http://www.ukbiobank.ac.uk/wp-content/uploads/2016/06/information_leaflet_imaging.pdf
  13. UK Biobank (2015a) UK Biobank body (abdominal) MRI scan. http://biobank.ctsu.ox.ac.uk/crystal/docs/body_mri_explan.pdf
  14. UK Biobank (2015b) UK Biobank imaging modality cardiovascular magnetic resonance (CMR). http://biobank.ctsu.ox.ac.uk/crystal/refer.cgi?id=349
  15. UK Biobank (2015c) UK Biobank imaging modality DXA. http://biobank.ctsu.ox.ac.uk/crystal/refer.cgi?id=502
  16. UK Biobank (2015d) UK Biobank imaging modality: carotid ultrasound. http://biobank.ctsu.ox.ac.uk/crystal/refer.cgi?id=511
  17. UK Biobank (2015e) UK Biobank: report on feasibility of imaging assessments in 100,000 participants.Google Scholar
  18. UK Biobank (2016) UK Biobank brain imaging documentation. http://biobank.ctsu.ox.ac.uk/crystal/refer.cgi?id=1977
  19. West J, Dahlqvist Leinhard O, Romu T, Collins R, Garratt S, Bell JD, Borga M, Thomas L (2016) Feasibility of MR-based body composition analysis in large scale population studies. PLoS One 11(9):e0163332. doi: 10.1371/journal.pone.0163332 CrossRefPubMedPubMedCentralGoogle Scholar
  20. Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton W, Fletcher JG, Georgieff MK, Hammerschmidt D, Illes J, Kapur V, Keane MA, Koenig BA, Leroy BS, McFarland EG, Paradise J, Parker LS, Terry SF, Ness BV, Wilfond BS (2008) Managing incidental findings in human subjects research: analysis and recommendations. J law Med Ethics J Am Soc Law Med Ethics 36(2):211–219. doi: 10.1111/j.1748-720X.2008.00266.x.Managing Google Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Lorna M. Gibson
    • 1
  • Jonathan Sellors
    • 2
    • 3
  • Cathie L. M. Sudlow
    • 1
    • 3
  1. 1.Centre for Clinical Brain SciencesUniversity of EdinburghEdinburghUK
  2. 2.Clinical Trial Service Unit and Epidemiological Studies Unit, Nuffield Department of Population HealthUniversity of OxfordOxfordUK
  3. 3.UK Biobank Coordinating CentreStockportUK

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