The Rise of Citizen Science in Health and Biomedical Research
- PMID: 31339831
- DOI: 10.1080/15265161.2019.1619859
The Rise of Citizen Science in Health and Biomedical Research
Abstract
Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for citizen science in health and biomedical research.
Keywords: citizen science; confidentiality and privacy; participatory research; professional–patient relationship; research ethics; social science research.
Comment in
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Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research.Am J Bioeth. 2019 Aug;19(8):1-2. doi: 10.1080/15265161.2019.1639389. Am J Bioeth. 2019. PMID: 31339830 No abstract available.
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N-of-1 Precision Medicine and Research Oversight.Am J Bioeth. 2019 Aug;19(8):36-37. doi: 10.1080/15265161.2019.1619871. Am J Bioeth. 2019. PMID: 31544631 No abstract available.
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Ethically Justified Restrictions on Citizen Science: A Perspective from Singapore.Am J Bioeth. 2019 Aug;19(8):38-40. doi: 10.1080/15265161.2019.1619872. Am J Bioeth. 2019. PMID: 31544632 No abstract available.
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Who Watches the Step-Watchers: The Ups and Downs of Turning Anecdotal Citizen Science into Actionable Clinical Data.Am J Bioeth. 2019 Aug;19(8):44-46. doi: 10.1080/15265161.2019.1619873. Am J Bioeth. 2019. PMID: 31544633 No abstract available.
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Citizen Science for Biomedical Research and Contributive Justice.Am J Bioeth. 2019 Aug;19(8):60-62. doi: 10.1080/15265161.2019.1619875. Am J Bioeth. 2019. PMID: 31544634 No abstract available.
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Cultural Considerations in Citizen Health Science and the Case for Community-Based Approaches.Am J Bioeth. 2019 Aug;19(8):40-43. doi: 10.1080/15265161.2019.1619874. Am J Bioeth. 2019. PMID: 31544635 No abstract available.
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Avoiding a Tyranny of the Majority: Public Deliberation as Citizen Science, Sensitive Issues, and Vulnerable Populations.Am J Bioeth. 2019 Aug;19(8):28-31. doi: 10.1080/15265161.2019.1619870. Am J Bioeth. 2019. PMID: 31544636 Free PMC article. No abstract available.
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Parsing the Line Between Professional and Citizen Science.Am J Bioeth. 2019 Aug;19(8):15-17. doi: 10.1080/15265161.2019.1619878. Am J Bioeth. 2019. PMID: 31544637 No abstract available.
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Beyond Belmont-and Beyond Regulations.Am J Bioeth. 2019 Aug;19(8):19-21. doi: 10.1080/15265161.2019.1619879. Am J Bioeth. 2019. PMID: 31544638 No abstract available.
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Considering Power Relations in Citizen Science.Am J Bioeth. 2019 Aug;19(8):48-49. doi: 10.1080/15265161.2019.1619863. Am J Bioeth. 2019. PMID: 31544639 No abstract available.
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Co-Production: An Ethical Model for Mental Health Research?Am J Bioeth. 2019 Aug;19(8):49-51. doi: 10.1080/15265161.2019.1619877. Am J Bioeth. 2019. PMID: 31544640 No abstract available.
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Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions.Am J Bioeth. 2019 Aug;19(8):17-19. doi: 10.1080/15265161.2019.1619880. Am J Bioeth. 2019. PMID: 31544641 No abstract available.
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Institutional Review Board Oversight of Citizen Science Research Involving Human Subjects.Am J Bioeth. 2019 Aug;19(8):21-23. doi: 10.1080/15265161.2019.1619864. Am J Bioeth. 2019. PMID: 31544642 Free PMC article. No abstract available.
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A Neglected Ethical Issue in Citizen Science and DIY Biology.Am J Bioeth. 2019 Aug;19(8):46-48. doi: 10.1080/15265161.2019.1619876. Am J Bioeth. 2019. PMID: 31544643 No abstract available.
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Citizen Science and the Politicization of Epistemology.Am J Bioeth. 2019 Aug;19(8):58-60. doi: 10.1080/15265161.2019.1619860. Am J Bioeth. 2019. PMID: 31544644 No abstract available.
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Should Patient Groups Have the Power to Redirect How Their Samples Are Used?Am J Bioeth. 2019 Aug;19(8):26-28. doi: 10.1080/15265161.2019.1619865. Am J Bioeth. 2019. PMID: 31544645 No abstract available.
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The Importance of Gatekeeping in Citizen Science.Am J Bioeth. 2019 Aug;19(8):56-58. doi: 10.1080/15265161.2019.1619861. Am J Bioeth. 2019. PMID: 31544646 No abstract available.
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Challenges of Citizen Science: Commons, Incentives, Organizations, and Regulations.Am J Bioeth. 2019 Aug;19(8):52-54. doi: 10.1080/15265161.2019.1619862. Am J Bioeth. 2019. PMID: 31544647 No abstract available.
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The Ethics of Public and Service User Involvement in Health Research: The Need for Participatory Reflection on Everyday Ethical Issues.Am J Bioeth. 2019 Aug;19(8):23-25. doi: 10.1080/15265161.2019.1619869. Am J Bioeth. 2019. PMID: 31544648 No abstract available.
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Learning Not Just From But With Citizens: The Importance of Co-Design in Health-Related Social Research.Am J Bioeth. 2019 Aug;19(8):54-56. doi: 10.1080/15265161.2019.1619866. Am J Bioeth. 2019. PMID: 31544649 No abstract available.
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Engaging the "Citizen" in Citizen Science: Who's Actually Included?Am J Bioeth. 2019 Aug;19(8):31-33. doi: 10.1080/15265161.2019.1619868. Am J Bioeth. 2019. PMID: 31544650 No abstract available.
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The Challenge of Demandingness in Citizen Science and Participatory Research.Am J Bioeth. 2019 Aug;19(8):33-35. doi: 10.1080/15265161.2019.1619867. Am J Bioeth. 2019. PMID: 31544651 No abstract available.
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