“A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight. Trejo, M., Canfield, I., Brooks, W. B., Pearlman, A., & Guerrini, C. Citizen Science: Theory and Practice, 6(1):15, May, 2021. ZSCC: 0000000![“A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight [link]](https://bibbase.org/img/filetypes/link.svg "link")
Paper doi abstract bibtex As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is 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.
@article{trejo_cohort_2021,
title = {“{A} {Cohort} of {Pirate} {Ships}”: {Biomedical} {Citizen} {Scientists}’ {Attitudes} {Toward} {Ethical} {Oversight}},
volume = {6},
copyright = {Authors who publish with this journal agree to the following terms: Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal. Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access ). All third-party images reproduced on this journal are shared under Educational Fair Use. For more information on Educational Fair Use , please see this useful checklist prepared by Columbia University Libraries . All copyright of third-party content posted here for research purposes belongs to its original owners. Unless otherwise stated all references to characters and comic art presented on this journal are ©, ® or ™ of their respective owners. No challenge to any owner’s rights is intended or should be inferred.},
issn = {2057-4991},
shorttitle = {“{A} {Cohort} of {Pirate} {Ships}”},
url = {http://theoryandpractice.citizenscienceassociation.org/articles/10.5334/cstp.360/},
doi = {10.5334/cstp.360},
abstract = {As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is 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.},
language = {en},
number = {1},
urldate = {2021-06-04},
journal = {Citizen Science: Theory and Practice},
author = {Trejo, Meredith and Canfield, Isabel and Brooks, Whitney Bash and Pearlman, Alex and Guerrini, Christi},
month = may,
year = {2021},
note = {ZSCC: 0000000},
keywords = {DIY biology, Institutional Review Board, biohacking, citizen science, community biology, research ethics},
pages = {15},
}
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