TY - JOUR
T1 - Meeting the needs of underserved populations
T2 - Setting the agenda for more inclusive citizen science of medicine
AU - Fiske, Amelia
AU - Prainsack, Barbara
AU - Buyx, Alena
N1 - Publisher Copyright:
© 2019 Author(s).
PY - 2019/9/1
Y1 - 2019/9/1
N2 - 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.
AB - 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.
KW - biomedicine
KW - citizen science
KW - medical ethics
KW - medical research
KW - participant-led research
KW - participation
UR - http://www.scopus.com/inward/record.url?scp=85070818609&partnerID=8YFLogxK
U2 - 10.1136/medethics-2018-105253
DO - 10.1136/medethics-2018-105253
M3 - Article
C2 - 31300487
AN - SCOPUS:85070818609
SN - 0306-6800
VL - 45
SP - 617
EP - 622
JO - Journal of Medical Ethics
JF - Journal of Medical Ethics
IS - 9
ER -