“A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight
Open accessAbstract
As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. The ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public is a significant concern because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what has been called an ethics gap. Working to close this gap, practitioners and scholars have considered new mechanisms of ethical oversight for biomedical citizen science. To date, however, participants' attitudes about ethics and oversight preferences have not been systematically examined. This information is useful to efforts to develop ethical oversight mechanisms because it provides a basis for evaluating the likely effectiveness of specific features of such mechanisms and their acceptability from the perspective of biomedical citizen scientists. Here, we report data from qualitative interviews with 35 stakeholders in bottom-up biomedical citizen science about their general ethics attitudes and preferences regarding ethical oversight. Interviewees described ten ethical priorities and endorsed oversight mechanisms that are voluntary, community-driven, and offer guidance. Conversely, interviewees rejected mechanisms that are mandatory, hierarchical, and inflexible. Applying these findings, we conclude that expert consultation and community review models appear to align well with ethical priorities and oversight preferences of many biomedical citizen scientists, although local conditions should guide the development and use of mechanisms in specific communities.
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Governance models such as fractional ownership schemes and creative attribution systems are emerging to keep contributors acknowledged and engaged.
“but governance models such as fractional ownership schemes and creative attribution systems are emerging to keep contributors acknowledged and engaged (Smith 2024; Trejo et al. 2021).”
From Listening forward: emerging roles of bioacoustics in ecology, evolution, and conservation (2026) · cites this paper as Trejo et al. 2021
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- Authors
- Trejo, M., Canfield, I., Brooks, W. B., Pearlman, A., & Guerrini, C.
- Affiliations
- Baylor College of Medicine (US)
- Corresponding author
- Guerrini, Christi
- Venue
- Citizen Science: Theory and Practice
- Publisher
- Ubiquity Press, Ltd.
- Published
- 2021-05-20
- Volume
- 6
- Issue
- 1
- Pages
- 15
- ISSN
- 2057-4991 (ISSN-L)
- PMC
- PMC9037960
- OpenAlex
- W3161746696
- Cited by
- 11
- References
- 33
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 1 · 2023: 2 · 2022: 4
- FWCI
- 1.51
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Citizen Science Theory and Practice (publishedVersion, cc-by)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Citizen Science: Theory and Practice (Citizen Science Association) (submittedVersion, cc-by)
- Funders
- National Human Genome Research Institute (K01HG009355)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- ethical oversight, research ethics committees, participant attitudes, expert consultation, stakeholder perspectives
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