Papers on Clinical Trial Participation
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2007 “Coming Soon to a Physician Near You: Medical Neoliberalism and Pharmaceutical Clinical Trials.” Harvard Health Policy Review 8 (1): 61-70.
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2007 “'Ready-to-Recruit' or 'Ready-to-Consent' Populations?: Informed Consent and the Limits of Subject Autonomy.” Qualitative Inquiry 13 (6): 875-894.
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2011 “Challenging Assumptions about Minority Participation in U.S. Clinical Research” (with Corey A. Kalbaugh). American Journal of Public Health 101 (12): 2217-2222.
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2013 “Expanding the Frame of ‘Voluntariness’ in Informed Consent: Structural Coercion and the Power of Social and Economic Context.” Kennedy Institute of Ethics Journal 23 (4): 355-379.
2015 “Stopped Hearts, Amputated Toes, and NASA: Contemporary Legends among Healthy Volunteers in US Phase I Clinical Trials.” Sociology of Health and Illness 37 (1): 127-142.
2015 “Feeding and Bleeding: The Institutional Banalization of Risk to Healthy Volunteers in Phase I Pharmaceutical Clinical Trials.” Science, Technology, & Human Values 40 (2): 199-226.
2015 “Using ‘Clinical Trial Diaries’ to Track Patterns of Participation for Serial Healthy Volunteers in U.S. Phase I Studies” (with Heather B. Edelblute). Journal of Empirical Research on Human Research Ethics 10 (1): 65-75.
2015 “‘I’m Still a Hustler’: Entrepreneurial Responses to Precarity by Participants in Phase I Clinical Trials” (with Torin Monahan). Economy and Society 44 (4): 545-566.
2016 “Risk and Emotion Among Healthy Volunteers in Clinical Trials” (with Marci D. Cottingham). Social Psychology Quarterly 79 (3): 222-242.
2017 “From Fantasy to Reality: Managing Biomedical Risk Emotions in and through Fictional Media” (with Marci D. Cottingham). Health, Risk, and Society 19 (5-6): 284-300.
2017 “This Isn’t Going to End Well: Fictional Representations of Medical Research in Television and Film” (with Marci D. Cottingham). Public Understanding of Science 26 (5): 564-578.
2018 “Serial Participation and the Ethics of Phase 1 Healthy Volunteer Research” (with Rebecca L. Walker & Marci D. Cottingham). Journal of Medicine and Philosophy 43 (1): 83-114.
2018 “Exceptional Risk: Healthy Volunteers’ Perceptions of HIV/AIDS Clinical Trials" (with Marci D. Cottingham, Julianne M. Kalbaugh, & Teresa Swezey). Journal of Acquired Immune Deficiency Syndromes 79: S30-S36.
2018 “Ethics of Treatment Interruption Trials in HIV Cure Research: Addressing the Conundrum of Risk/Benefit Assessment” (with Gail E. Henderson et al.). Journal of Medical Ethics 44 (4): 270-276.
2018 “To Report or Not to Report: Exploring Healthy Volunteers’ Rationales for Disclosing Adverse Events in Phase I Drug Trials” (with Lisa McManus). AJOB Empirical Bioethics 9 (2): 82-90.
2018 “Captive to the Clinic: Phase I Clinical Trials as Temporal Total Institutions” (with Quintin Williams). Sociological Inquiry 88 (4): 724-748.
2018 “Healthy Volunteers’ Perceptions of the Benefits of their Participation in Phase I Clinical Trials” (with Lisa McManus et al.). Journal of Empirical Research on Human Research Ethics 13 (5): 494-510.
2018 “Healthy Volunteers’ Perceptions of Risk in U.S. Phase I Clinical Trials: A Mixed-Methods Study” (with Lisa McManus et al.). PLOS Medicine 15 (11): e1002698.
2019 “Appraising Harm in Phase I Trials: Healthy Volunteers’ Accounts of Adverse Events” (with Lisa McManus et al.). Journal of Law, Medicine & Ethics 47 (2): 323-333.
2019 “Commentary on Zvonareva et al.: Exploring the Many Meanings of ‘Professional’ in Research Participation.” Clinical Trials 16 (6): 571-573.
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2019 “‘My Body Is One of the Best Commodities’: Exploring the Ethics of Commodification in Phase I Healthy Volunteer Clinical Trials” (with Rebecca L. Walker). Kennedy Institute of Ethics Journal 29 (4): 305-331.
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2019 “Picking and Choosing Among Phase I Trials: A Qualitative Examination of How Healthy Volunteers Understand Study Risks” (with Torin Monahan & Rebecca L. Walker). Journal of Bioethical Inquiry 16 (4): 535-549.
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2020 “Disadvantaged, Outnumbered, and Discouraged: Women’s Experiences as Healthy Volunteers in U.S. Phase I Trials” (with Nupur Jain & Marci D. Cottingham). Critical Public Health 30 (2): 141-152.
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2020 “Sacrificial Labour: Social Inequality, Identity Work, and the Damaging Pursuit of Elusive Futures” (with Torin Monahan). Work, Employment & Society 34 (3): 441-456.
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2021. “Speculating on Precarious Income: Finance Cultures and the Risky Strategies of Healthy Volunteers in Clinical Drug Trials” (with Megan M. Wood & Torin Monahan). Journal of Cultural Economy 14 (4): 464-484.
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2021. “Phase I Trial Compensation: How Much Do Healthy Volunteers Actually Earn from Clinical Trial Enrollment?” (with Lisa McManus, Julianne M. Kalbaugh, & Rebecca L. Walker). Clinical Trials 18 (4): 477-487.
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2021. “Healthy Volunteers in US Phase I Clinical Trials: Sociodemographic Characteristics and Participation Over Time" (with Corey A. Kalbaugh, Julianne M. Kalbaugh, & Lisa McManus). PLoS ONE 16 (9): e0256994.
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2022. “Gendered Logics of Biomedical Research: Women in U.S. Phase I Clinical Trials” (with Marci D. Cottingham). Social Problems 69 (2): 492-509.
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2023. “‘Death and Taxes’: Why Financial Compensation for Research Participants is an Economic and Legal Risk” (with Margaret Waltz & Arlene Davis). Journal of Law, Medicine & Ethics 51 (2): 413-425.
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2023 “Exclusion of Women from Phase I Trials: Perspectives from Investigators and Research Oversight Officials”(with Margaret Waltz & Anne D. Lyerly). Ethics & Human Research 45 (6): 19-30.
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2023 “Mutual Emotional Labor as Method: Building Connections of Care in Qualitative Research” (with Torin Monahan). The Qualitative Report 28 (11): 3192-3212.
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2023 “The VolREthics Initiative to Protect the Well-being of Healthy Volunteers in Biomedical Research” (with François Bompart, Elizabeth Allen, Esperança Sevene, Nandini Kumar, Chun Keat Chew, Valeria Fink, Dirk Lanzerath, & François Hirsch). Nature Medicine 29: 2393–2394.
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2023 “Global Efforts to Protect Healthy Volunteers.” The Hastings Center Report 53 (4): 2.
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2024 “A Global Ethics Charter to Protect Healthy Volunteers” (with François Bompart, Lorenzo Montrasio, Shadreck Mwale, Chun Keat Chew, Sucheta B Kurundkar, Yves Donazzolo, & François Hirsch). The Lancet 404 (10453): 651.
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2024 “Declaration of Helsinki’s Missed Opportunity for Healthy Volunteer Trials” (with François Bompart, Sucheta Banerjee Kurundkar, François Hirsch, & Shadreck Mwale). The Lancet 404 (10467): 2047-2048.
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2025 “Implementing a Global Ethics Charter to Protect US Healthy Volunteers” (with Roberto Abadie & François Hirsch). The American Journal of Medicine 138 (4): 601-603.
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2025 Reply to “The Global Ethics Health Charter to Protect Healthy Volunteers: Is the Problem Local or International?” (with Roberto Abadie, François Hirsch, François Bompart, Deepa Arora, Nandini K. Kumar, & Sucheta Banerjee Kurundkar). The American Journal of Medicine 138 (6): e113-e114.
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2025 “Policy Recommendations for Implementing Registries to Minimize Over-Volunteering in Phase I Clinical Trials”(with Roberto Abadie, Shadreck Mwale, François Bompart, & François Hirsch). Clinical Trials. Online first.
2025 “Medical Research Participants Deserve to Be Paid Well” (with Jake Eberts). STAT, July 17, 2025.
2025 “Putting Financial Compensation for Research in a Different Risk Framework.”Journal of Law, Medicine & Ethics 53 (2): 210-211.
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2025 “Pursuing Fair and Just Compensation for Research Participants: An Open Letter to the Research Ethics Community” (with Roberto Abadie, Emily Anderson, Jake Eberts, Holly Fernandez Lynch, Luke Gelinas, Emily Largent, & Lindsay McNair). American Journal of Bioethics.
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