Meeting the needs of underserved populations: Setting the agenda for more inclusive citizen science of medicine

Fiske A, Prainsack B, Buyx A (2019)

Publication Type: Journal article

Publication year: 2019

Journal

Journal of Medical Ethics BMJ Publishing Group

Book Volume: 45

Pages Range: 617-622

Journal Issue: 9

DOI: 10.1136/medethics-2018-105253

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.

Involved external institutions

Technische Universität München (TUM) DE Germany (DE) Universität Wien / University of Vienna AT Austria (AT)

How to cite

APA:

Fiske, A., Prainsack, B., & Buyx, A. (2019). Meeting the needs of underserved populations: Setting the agenda for more inclusive citizen science of medicine. Journal of Medical Ethics, 45(9), 617-622. https://doi.org/10.1136/medethics-2018-105253

MLA:

Fiske, Amelia, Barbara Prainsack, and Alena Buyx. "Meeting the needs of underserved populations: Setting the agenda for more inclusive citizen science of medicine." Journal of Medical Ethics 45.9 (2019): 617-622.

BibTeX: Download