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Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine
  1. Amelia Fiske1,2,
  2. Barbara Prainsack3,4,
  3. Alena Buyx1
  1. 1 Institute for History and Ethics in Medicine, Technical University of Munich, Munich, Germany
  2. 2 Anthropology Department, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
  3. 3 Department of Political Science, University of Vienna, Vienna, Austria
  4. 4 Department of Global Health & Social Medicine, King’s College London, London, UK
  1. Correspondence to Dr Amelia Fiske, Institut für Geschichte und Ethik der Medizin, Technische Universitat Munchen, Munchen 81675, Germany; a.fiske{at}tum.de

Abstract

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research.

  • citizen science
  • participant-led research
  • participation
  • biomedicine
  • medical research
  • medical ethics

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/.

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Footnotes

  • Contributors All authors contributed significantly to this article.

  • Funding This paper was written with support from the Bundesministerium für Bildung und Forschung (BMBF), Grant number 01GP1311, and from the Wellcome Trust Biomedical Resource Grant, Twins UK: An epidemiological and genomic resource 202786/Z/16/Z.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Patient consent for publication Not required.

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