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  1. Citizen Neuroscience: Brain–Computer Interface Researcher Perspectives on Do-It-Yourself Brain Research.Stephanie Naufel & Eran Klein - 2020 - Science and Engineering Ethics 26 (5):2769-2790.
    Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface researchers to gather their perspectives (...)
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  • Epistemic Ignorance, Poverty and the COVID-19 Pandemic.Cristian Timmermann - 2020 - Asian Bioethics Review 12.
    In various responses to the COVID-19 pandemic, we can observe insufficient sensitivity towards the needs and circumstances of poorer citizens. Particularly in a context of high inequality, policy makers need to engage with the wider public in debates and consultations to gain better insights in the realities of the worst-off within their jurisdiction. When consultations involve members of traditionally underrepresented groups, these are not only more inclusive, which is in itself an ethical aim, but pool ideas and observations from a (...)
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  • How Biomedical Citizen Scientists Define What They Do: It’s All in the Name.Meredith Trejo, Isabel Canfield, Jill O. Robinson & Christi J. Guerrini - forthcoming - Ajob Empirical Bioethics:1-8.
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  • The Perils of Parity: Should Citizen Science and Traditional Research Follow the Same Ethical and Privacy Principles?Barbara J. Evans - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):74-81.
    The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and how (...)
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  • International mHealth Research: Old Tools and New Challenges.Michael Lang, Bartha Maria Knoppers & Ma’N. H. Zawati - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):178-186.
    In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.
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  • Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):196-226.
    Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...)
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  • Co-Production: An Ethical Model for Mental Health Research?Sapfo Lignou, Liliana Capitao, Julia Madeleine Hamer-Hunt & Ilina Singh - 2019 - American Journal of Bioethics 19 (8):49-51.
    Volume 19, Issue 8, August 2019, Page 49-51.
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  • Avoiding a Tyranny of the Majority: Public Deliberation as Citizen Science, Sensitive Issues, and Vulnerable Populations.Mary A. Ott & Amelia S. Knopf - 2019 - American Journal of Bioethics 19 (8):28-31.
    Volume 19, Issue 8, August 2019, Page 28-31.
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  • The Ethics of Public and Service User Involvement in Health Research: The Need for Participatory Reflection on Everyday Ethical Issues.Tineke Abma, Barbara Groot & Guy Widdershoven - 2019 - American Journal of Bioethics 19 (8):23-25.
    Volume 19, Issue 8, August 2019, Page 23-25.
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  • Citizen Science for Biomedical Research and Contributive Justice.Cristian Timmermann - 2019 - American Journal of Bioethics 19 (8):60-62.
    Engaging citizens in science projects has a number of epistemic benefits in terms of improving scientific out- comes and adjusting research to develop innovative solu- tions that are likelier to be used. Yet the emphasis on the epistemic benefits of citizen science projects and its risks, such as exploitation and a lack of benefit-sharing, a fail- ure to sufficiently inform participants of possible hazards and privacy issues, and unacknowledged authorship, which we can find in Wiggins and Wilbanks (2019), should not (...)
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  • Citizen Science and the Politicization of Epistemology.Narcyz Ghinea - 2019 - American Journal of Bioethics 19 (8):58-60.
    Volume 19, Issue 8, August 2019, Page 58-60.
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  • The Importance of Gatekeeping in Citizen Science.Mark S. Davis - 2019 - American Journal of Bioethics 19 (8):56-58.
    Volume 19, Issue 8, August 2019, Page 56-58.
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  • Learning Not Just From But With Citizens: The Importance of Co-Design in Health-Related Social Research.Rachel A. Ankeny & Helen Barrie - 2019 - American Journal of Bioethics 19 (8):54-56.
    Volume 19, Issue 8, August 2019, Page 54-56.
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  • Challenges of Citizen Science: Commons, Incentives, Organizations, and Regulations.Karsten Weber, Frank Pallas & Max-R. Ulbricht - 2019 - American Journal of Bioethics 19 (8):52-54.
    Volume 19, Issue 8, August 2019, Page 52-54.
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  • Considering Power Relations in Citizen Science.Jason David Keune - 2019 - American Journal of Bioethics 19 (8):48-49.
    Volume 19, Issue 8, August 2019, Page 48-49.
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  • A Neglected Ethical Issue in Citizen Science and DIY Biology.Lucie White - 2019 - American Journal of Bioethics 19 (8):46-48.
    Andrea Wiggins and John Wilbanks’ article (2019) presents us with a welcome overview of the neglected, novel ethical issues raised by the advent of citizen science in health and biomedical contexts. This contribution takes a rather different approach, focusing on a very specific (yet also overlooked) problem in this context - the ethical implications of self-administered genetic testing. This problem, however, is particularly illustrative of the “ethics gap” between traditional medical settings and new public-driven scientific practices, emphasized by Wiggins and (...)
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  • Who Watches the Step-Watchers: The Ups and Downs of Turning Anecdotal Citizen Science Into Actionable Clinical Data.Maya Sherman, Ziv Idan & Dov Greenbaum - 2019 - American Journal of Bioethics 19 (8):44-46.
    Volume 19, Issue 8, August 2019, Page 44-46.
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  • Cultural Considerations in Citizen Health Science and the Case for Community-Based Approaches.Victoria J. Metcalf & Rochelle L. Style - 2019 - American Journal of Bioethics 19 (8):40-43.
    Volume 19, Issue 8, August 2019, Page 40-43.
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  • Ethically Justified Restrictions on Citizen Science: A Perspective From Singapore.Markus Labude & Vicki Xafis - 2019 - American Journal of Bioethics 19 (8):38-40.
    Volume 19, Issue 8, August 2019, Page 38-40.
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  • N-of-1 Precision Medicine and Research Oversight.Andrew Crouse, Mariko Nakano-Okuno, Matthew Might & Thomas May - 2019 - American Journal of Bioethics 19 (8):36-37.
    Volume 19, Issue 8, August 2019, Page 36-37.
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  • The Challenge of Demandingness in Citizen Science and Participatory Research.Karin Jongsma & Phoebe Friesen - 2019 - American Journal of Bioethics 19 (8):33-35.
    Volume 19, Issue 8, August 2019, Page 33-35.
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  • Engaging the “Citizen” in Citizen Science: Who’s Actually Included?Hina Walajahi - 2019 - American Journal of Bioethics 19 (8):31-33.
    Volume 19, Issue 8, August 2019, Page 31-33.
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  • Should Patient Groups Have the Power to Redirect How Their Samples Are Used?Eleanor T. Chung & Benjamin E. Berkman - 2019 - American Journal of Bioethics 19 (8):26-28.
    Volume 19, Issue 8, August 2019, Page 26-28.
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  • Institutional Review Board Oversight of Citizen Science Research Involving Human Subjects.David B. Resnik - 2019 - American Journal of Bioethics 19 (8):21-23.
    Volume 19, Issue 8, August 2019, Page 21-23.
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  • Beyond Belmont—and Beyond Regulations.Lisa M. Rasmussen - 2019 - American Journal of Bioethics 19 (8):19-21.
    Volume 19, Issue 8, August 2019, Page 19-21.
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  • Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions.Christi J. Guerrini, Anna Wexler, Patricia J. Zettler & Amy L. McGuire - 2019 - American Journal of Bioethics 19 (8):17-19.
    Volume 19, Issue 8, August 2019, Page 17-19.
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  • Parsing the Line Between Professional and Citizen Science.Barbara J. Evans - 2019 - American Journal of Bioethics 19 (8):15-17.
    Volume 19, Issue 8, August 2019, Page 15-17.
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  • Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research.Bray Patrick-Lake & Jennifer C. Goldsack - 2019 - American Journal of Bioethics 19 (8):1-2.
    Volume 19, Issue 8, August 2019, Page 1-2.
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