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Extended essay
Taking it to the bank: the ethical management of individual findings arising in secondary research
  1. Mackenzie Graham1,
  2. Nina Hallowell2,
  3. Berge Solberg3,
  4. Ari Haukkala4,
  5. Joanne Holliday5,
  6. Angeliki Kerasidou2,
  7. Thomas Littlejohns5,
  8. Elizabeth Ormondroyd6,
  9. John-Arne Skolbekken3,
  10. Marleena Vornanen7,8
  11. The Northern European Returning Results Network
    1. 1 Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK
    2. 2 Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK
    3. 3 Department of Public Health and General Practice, The Norwegian University of Science and Technology, Trondheim, Norway
    4. 4 Faculty of Social Sciences; Helsinki Collegium for Advanced Studies, University of Helsinki, Helsinki, Finland
    5. 5 Nuffield Department of Population Health, University of Oxford, Oxford, UK
    6. 6 NIHR Oxford Biomedical Research Centre, University of Oxford, Oxford, UK
    7. 7 Center for Population, Health and Society, University of Helsinki, Helsinki, Finland
    8. 8 Open University, Milton Keynes, UK
    1. Correspondence to Dr Mackenzie Graham, Nuffield Department of Population Health, University of Oxford, Oxford OX1 2JD, UK; mackenzie.graham{at}philosophy.ox.ac.uk

    Abstract

    A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants.

    • ethics
    • research ethics
    • genethics
    https://creativecommons.org/licenses/by/4.0/

    This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

    https://doi.org/10.1136/medethics-2020-106941

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      Footnotes

      • Correction notice This paper has been updated since first published to amend author details.

      • Collaborators The Northern European Returning Results Network includes Naomi Allen, Otto H.W. Halmesvaara, Bjørn K. Myskja, Michael Parker, Kristin S. Steinsbekk, and Lars Ø. Ursin.

      • Contributors MG conceived of arguments of the paper, and wrote all drafts of the paper. NH collaborated on conception of paper and provided feedback on two drafts sent to larger group. BS provided extensive comments to two drafts sent to larger group. All other authors provided substantive comments on two drafts sent to larger group.

      • Funding The Wellcome Centre for Ethics and Humanities is supported by a Wellcome Centre Grant (203132/Z/16/Z). MG was supported by the National Consortium of Intelligent Medical Imaging through the Industry Strategy Challenge Fund (Innovate UK Grant 104688). This work was also supported by a Wellcome Trust Grant (213081/Z/18/Z) awarded to NH, for ‘Returning Research Results: a Northern European Research Network’. EO was supported by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

      • Competing interests None declared.

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