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  1. Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst - 2016 - BMC Medical Ethics 17 (1):1.
    The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...)
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  • A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.M. Smirnoff, I. Wilets, D. F. Ragin, R. Adams, J. Holohan, R. Rhodes, G. Winkel, E. M. Ricci, C. Clesca & L. D. Richardson - 2018 - AJOB Empirical Bioethics 9 (1):39-47.
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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 (S1):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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  • The Legacy of the U. S. Public Health Service Study of Untreated Syphilis in African American Men at Tuskegee on the Affordable Care Act and Health Care Reform Fifteen Years after President Clinton's Apology.Vickie M. Mays - 2012 - Ethics and Behavior 22 (6):411-418.
    This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We hope the guidance offered in (...)
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  • Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research.Sarah Gehlert & Jessica Mozersky - 2018 - Journal of Law, Medicine and Ethics 46 (1):30-43.
    Although the importance of including vulnerable populations in medical research is widely accepted, identifying how to achieve such inclusion remains a challenge. Ensuring that the language of informed consent is comprehensible to this group is no less of a challenge. Although a variety of interventions show promise for increasing the comprehensibility of informed consent and increasing a climate of exchange, consensus is lacking on which interventions should be used in which situations and current regulations provide little guidance. We argue that (...)
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  • Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research.Nanibaa' A. Garrison - 2013 - Science, Technology, and Human Values 38 (2):201-223.
    In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board chairs and human genetics researchers at US (...)
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