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Meghan C. Halley [4]Meghan Halley [3]
  1.  99
    Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (4):3-20.
    With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...)
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  2.  24
    Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.Meghan C. Halley, Colin M. E. Halverson, Holly K. Tabor & Aaron J. Goldenberg - 2023 - American Journal of Bioethics 23 (7):17-26.
    Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...)
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  3.  10
    From “Ought” to “Is”: Surfacing Values in Patient and Family Advocacy in Rare Diseases.Meghan C. Halley - 2021 - American Journal of Bioethics 21 (12):1-3.
    In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...
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  4.  9
    Beyond “Ensuring Understanding”: Toward a Patient-Partnered Neuroethics of Brain Device Research.Meghan C. Halley, Tracy Dixon-Salazar & Anna Wexler - 2022 - American Journal of Bioethics Neuroscience 13 (4):241-244.
    The work of Sankary et al. (2022) provides valuable insights into the experiences of participants exiting brain device research. Empirical bioethics research such as this is critical to understandi...
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  5.  13
    Moral Engagement and Disengagement in Health Care AI Development.Ariadne A. Nichol, Meghan Halley, Carole Federico, Mildred K. Cho & Pamela L. Sankar - forthcoming - AJOB Empirical Bioethics.
    Background Machine learning (ML) is utilized increasingly in health care, and can pose harms to patients, clinicians, health systems, and the public. In response, regulators have proposed an approach that would shift more responsibility to ML developers for mitigating potential harms. To be effective, this approach requires ML developers to recognize, accept, and act on responsibility for mitigating harms. However, little is known regarding the perspectives of developers themselves regarding their obligations to mitigate harms.Methods We conducted 40 semi-structured interviews with (...)
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  6.  23
    What is “Personal” About Personal Experience? A Call to Reflexivity for All.Meghan Halley & Colin Halverson - 2023 - American Journal of Bioethics 23 (1):39-41.
    In their article, Nelson et al. (2023) raise concerns regarding the “paradox of experience” as it relates to the practice of bioethics. They argue that while experience provides individuals with in...
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  7.  19
    Blurred Boundaries: Toward an Expanded Ethics of Research and Clinical Care.Nate W. Olson & Meghan C. Halley - 2023 - American Journal of Bioethics 23 (8):5-9.
    In this issue, Morain and Largent (2023) raise a pressing issue arising in the context of embedded research—the nature and extent of investigator duties to patient-participants when the line betwee...
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