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Emily A. Largent [36]Emily Largent [11]
  1.  19
    Think Pragmatically: Investigators’ Obligations to Patient-Subjects When Research is Embedded in Care.Stephanie R. Morain & Emily A. Largent - 2022 - American Journal of Bioethics 23 (8):10-21.
    Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients and other stakeholders. However, it also has presented ethical challenges. An emerging challenge is how to understand the nature and extent of investigators’ obligations to patient-subjects. Prior scholarship on investigator duties has generally been grounded upon the premise that research and clinical care are distinct activities, bearing distinct duties. Yet this premise—and its corresponding implications—are challenged (...)
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  2.  42
    When Is It Ethical for Physician-Investigators to Seek Consent From Their Own Patients?Stephanie R. Morain, Steven Joffe & Emily A. Largent - 2019 - American Journal of Bioethics 19 (4):11-18.
    Classic statements of research ethics advise against permitting physician-investigators to obtain consent for research participation from patients with whom they have preexisting treatment relationships. Reluctance about “dual-role” consent reflects the view that distinct normative commitments govern physician–patient and investigator–participant relationships, and that blurring the research–care boundary could lead to ethical transgressions. However, several features of contemporary research demand reconsideration of the ethics of dual-role consent. Here, we examine three arguments advanced against dual-role consent: that it creates role conflict for the (...)
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  3.  34
    Promoting Ethical Payment in Human Infection Challenge Studies.Holly Fernandez Lynch, Thomas C. Darton, Jae Levy, Frank McCormick, Ubaka Ogbogu, Ruth O. Payne, Alvin E. Roth, Akilah Jefferson Shah, Thomas Smiley & Emily A. Largent - 2021 - American Journal of Bioethics 21 (3):11-31.
    To prepare for potential human infection challenge studies involving SARS-CoV-2, we convened a multidisciplinary working group to address ethical questions regarding whether and how much SAR...
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  4.  38
    Journeying to Ixtlan: Ethics of Psychedelic Medicine and Research for Alzheimer’s Disease and Related Dementias.Andrew Peterson, Emily A. Largent, Holly Fernandez Lynch, Jason Karlawish & Dominic Sisti - 2023 - American Journal of Bioethics Neuroscience 14 (2):107-123.
    In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and consent; (...)
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  5.  49
    Can RESEARCH and CARE Be Ethically Integrated?Emily A. Largent, Steven Joffe & Franklin G. Miller - 2011 - Hastings Center Report 41 (4):37-46.
    Medical ethics assumes a clear boundary between clinical research and clinical medicine: one produces knowledge for the benefit of future patients, while the other provides optimal care to individuals right now. It also assumes that the two cannot be integrated without sacrificing the needs of the current patient to those of future patients. But integration could allow us to provide better care to everyone, now and in the future.
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  6.  30
    Supported Decision Making With People at the Margins of Autonomy.Andrew Peterson, Jason Karlawish & Emily Largent - 2020 - American Journal of Bioethics 21 (11):4-18.
    This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...)
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  7.  12
    What Makes a Better Life for People Facing Dementia? Toward Dementia‐Friendly Health and Social Policy, Medical Care, and Community Support in the United States.Barak Gaster & Emily A. Largent - 2024 - Hastings Center Report 54 (S1):40-47.
    Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might (...)
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  8. Misconceptions about coercion and undue influence: Reflections on the views of irb members.Emily Largent, Christine Grady, Franklin G. Miller & Alan Wertheimer - 2012 - Bioethics 27 (9):500-507.
    Payment to recruit research subjects is a common practice but raises ethical concerns relating to the potential for coercion or undue influence. We conducted the first national study of IRB members and human subjects protection professionals to explore attitudes as to whether and why payment of research participants constitutes coercion or undue influence. Upon critical evaluation of the cogency of ethical concerns regarding payment, as reflected in our survey results, we found expansive or inconsistent views about coercion and undue influence (...)
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  9.  14
    Diversity in IRB Membership: Views of IRB Chairpersons at U.S. Universities and Academic Medical Centers.Sydney Churchill, Emily A. Largent, Elizabeth Taggert & Holly Fernandez Lynch - 2022 - AJOB Empirical Bioethics 13 (4):237-250.
    Background Diversity in Institutional Review Board (IRB) membership is important for both intrinsic and instrumental reasons, including fairness, promoting trust, improving decision quality, and responding to systemic racism. Yet U.S. IRBs remain racially and ethnically homogeneous, even as gender diversity has improved. Little is known about IRB chairpersons’ perspectives on membership diversity and barriers to increasing it, as well as current institutional efforts to promote diversity, equity, and inclusion (DEI) within IRB membership.Methods We surveyed IRB chairpersons leading U.S. boards registered (...)
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  10.  9
    When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.Emily A. Largent, Jane Lowers, Thaddeus Mason Pope, Timothy E. Quill & Matthew K. Wynia - 2024 - Hastings Center Report 54 (S1):11-21.
    Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally (...)
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  11.  36
    Differential payment to research participants in the same study: an ethical analysis.Govind Persad, Holly Fernandez Lynch & Emily Largent - 2019 - Journal of Medical Ethics 45 (5):318-322.
    Recognising that offers of payment to research participants can serve various purposes—reimbursement, compensation and incentive—helps uncover differences between participants, which can justify differential payment of participants within the same study. Participants with different study-related expenses will need different amounts of reimbursement to be restored to their preparticipation financial baseline. Differential compensation can be acceptable when some research participants commit more time or assume greater burdens than others, or if inter-site differences affect the value of compensation. Finally, it may be permissible (...)
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  12.  25
    Public Attitudes toward Consent When Research Is Integrated into Care—Any “Ought” from All the “Is”?Stephanie R. Morain & Emily A. Largent - 2021 - Hastings Center Report 51 (2):22-32.
    Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether to obtain informed consent. Multiple empirical studies have explored patients' and the public's attitudes toward approaches to consent for pragmatic research. Questions remain, however, about how to use the resulting empirical data in resolving normative and policy debates and what (...)
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  13.  21
    Compensating for research risk: permissible but not obligatory.Holly Fernandez Lynch & Emily A. Largent - 2020 - Journal of Medical Ethics 46 (12):827-828.
    When payment is offered for controlled human infection model research, ethical concerns may be heightened due to unfamiliarity with this study design as well as perceptions—and misperceptions—regarding risk. Against this backdrop, we commend Grimwade et al 1 for their careful handling of the relevant issues, coupling empirical and conceptual approaches. We agree with foundational elements of the authors’ analysis, including the acceptability of payment for research risk.1 However, in our view, it is preferable to treat payment for risk as a (...)
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  14.  29
    For love and money: the need to rethink benefits in HIV cure studies.Emily Largent - 2017 - Journal of Medical Ethics 43 (2):96-99.
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  15.  31
    Differential Payments to Research Participants in the Same Study: An Ethical Analysis.Govind Persad, Holly Fernandez Lynch & Emily Largent - 2019 - Journal of Medical Ethics 1:10.1136/medethics-2018-105140.
    Recognizing that offers of payment to research participants can serve various purposes—reimbursement, compensation, and incentive—helps uncover differences between participants that can justify differential payment of participants within the same study. Participants with different study-related expenses will need different amounts of reimbursement to be restored to their pre-participation financial baseline. Differential compensation can be acceptable when some research participants commit more time or assume greater burdens than others, or if inter-site differences affect the value of compensation. Finally, it may be permissible (...)
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  16. COVID-19 Vaccine Refusal and Fair Allocation of Scarce Medical Resources.Govind Persad & Emily A. Largent - 2022 - JAMA Health Forum 3 (4):e220356.
    When hospitals face surges of patients with COVID-19, fair allocation of scarce medical resources remains a challenge. Scarcity has at times encompassed not only hospital and intensive care unit beds—often reflecting staffing shortages—but also therapies and intensive treatments. Safe, highly effective COVID-19 vaccines have been free and widely available since mid-2021, yet many Americans remain unvaccinated by choice. Should their decision to forgo vaccination be considered when allocating scarce resources? Some have suggested it should, while others disagree. We offer a (...)
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  17.  20
    Patient‐Centered Outcomes Research: Stakeholder Perspectives and Ethical and Regulatory Oversight Issues.Emily A. Largent, Joel S. Weissman, Avni Gupta, Melissa Abraham, Ronen Rozenblum, Holly Fernandez Lynch & I. Glenn Cohen - 2018 - IRB: Ethics & Human Research 40 (1):7-17.
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  18.  28
    Patient‐Engaged Research: Choosing the “Right” Patients to Avoid Pitfalls.Emily A. Largent, Holly Fernandez Lynch & Matthew S. McCoy - 2018 - Hastings Center Report 48 (5):26-34.
    To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how should they (...)
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  19.  52
    Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation for Rare Diseases.Emily A. Largent & Steven D. Pearson - 2012 - Hastings Center Report 42 (1):27-34.
    The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic? (...)
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  20.  21
    From preferences to policies? Considerations when incorporating empirical ethics findings into research policymaking.Emily A. Largent & Stephanie R. Morain - 2020 - Journal of Medical Ethics 46 (6):378-379.
    Interest in the use of medical data for health research is increasing. Yet, as Elizabeth Ford and colleagues rightly note, there are open questions about the suitability of existing ethical and regulatory oversight frameworks for these research approaches. In their feature article, ‘Should free text data in electronic medical records be shared for research? A citizen’s jury study in the United Kingdom’, Ford et al report the results of a deliberative engagement study in which 18 members of the public were (...)
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  21.  26
    What's Trust Got to Do With It? Trust and the Importance of the Research–Care Distinction.Emily A. Largent - 2015 - American Journal of Bioethics 15 (9):22-24.
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  22.  35
    A Prescription for Ethical Learning.Emily A. Largent, Franklin G. Miller & Steven Joffe - 2013 - Hastings Center Report 43 (s1):28-29.
    We argued last year in this journal that extensive integration of research and care is a worthy goal of health system design, and we second the call from Ruth Faden and colleagues to move toward learning health care systems. As they recognize, learning health care systems demand the coordination of research and medical ethics—two sets of normative commitments that have long been considered distinct. In offering a novel ethics framework for such systems, Faden et al. advance the scholarly debate about (...)
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  23.  34
    A Prescription for Ethical Learning.Emily A. Largent, Franklin G. Miller & Steven Joffe - 2013 - Hastings Center Report 43 (s1):28-29.
    We argued last year in this journal that extensive integration of research and care is a worthy goal of health system design, and we second the call from Ruth Faden and colleagues to move toward learning health care systems. As they recognize, learning health care systems demand the coordination of research and medical ethics—two sets of normative commitments that have long been considered distinct. In offering a novel ethics framework for such systems, Faden et al. advance the scholarly debate about (...)
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  24.  18
    Deciding with Others: Interdependent Decision‐Making.Emily A. Largent, Justin Clapp, Jennifer S. Blumenthal-Barby, Christine Grady, Amy L. McGuire, Jason Karlawish, Joshua D. Grill, Shana D. Stites & Andrew Peterson - 2022 - Hastings Center Report 52 (6):23-32.
    Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's (...)
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  25.  43
    Of Drowning Children and Doubtful Analogies.Emily A. Largent - 2019 - Hastings Center Report 49 (4):26-28.
    In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational intervention targeted at patients with atrial fibrillation and their clinicians reduces underuse of oral anticoagulants. Worried (...)
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  26.  14
    Precision Medicine Research: An Exception or An Exemplar?Emily A. Largent - 2019 - Journal of Law, Medicine and Ethics 47 (1):149-151.
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  27.  26
    Filthy Lucre or Fitting Offer? Understanding Worries About Payments to Research Participants.Holly Fernandez Lynch, Ezekiel J. Emanuel & Emily A. Largent - 2019 - American Journal of Bioethics 19 (9):1-4.
    Volume 19, Issue 9, September 2019, Page 1-4.
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  28.  23
    Response to Open Peer Commentaries: When Is It Ethical for Physician-Investigators to Seek Consent From Their Own Patients?Stephanie R. Morain, Steven Joffe & Emily A. Largent - 2019 - American Journal of Bioethics 19 (5):W3-W4.
    Volume 19, Issue 5, May 2019, Page W3-W4.
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  29.  16
    Getting into Their Heads: When the Investigator is also the Treating Physician.Stephanie R. Morain, Emily A. Largent & Anna Wexler - 2021 - American Journal of Bioethics Neuroscience 12 (1):68-70.
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  30.  8
    Bioethicists Today: Results of the Views in Bioethics Survey.Leah Pierson, Sophie Gibert, Leila Orszag, Haley K. Sullivan, Rachel Yuexin Fei, Govind Persad & Emily A. Largent - forthcoming - American Journal of Bioethics.
    Bioethicists influence practices and policies in medicine, science, and public health. However, little is known about bioethicists’ views. We recently surveyed 824 U.S. bioethicists on a wide range of ethical issues, including topics related to abortion, medical aid in dying, and resource allocation, among others. We also asked bioethicists about their demographic, religious, academic, and professional backgrounds. We find that bioethicists’ normative commitments predict their views on bioethical issues. We also find that, in important ways, bioethicists’ views do not align (...)
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  31.  9
    Is Suffering a Useless Concept?Ryan H. Nelson, Brent Kious, Emily Largent, Bryanna Moore & Jennifer Blumenthal-Barby - forthcoming - American Journal of Bioethics:1-8.
    Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are (...)
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  32.  19
    Health Care Organizations and the Power of Procedure.Emily A. Largent - 2016 - American Journal of Bioethics 16 (1):51-53.
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  33.  24
    Issues With Tissues.Emily Largent - 2016 - American Journal of Bioethics 16 (11):37-39.
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  34.  26
    A Case of Patient Abandonment, or an Abandonment of Patients?Jason Karlawish, Andrew Peterson, Justin T. Clapp & Emily A. Largent - 2022 - American Journal of Bioethics 22 (7):86-87.
    First—before you define the dilemma, parse out principles, or vocalize about virtues—consider what caused this case.The COVID-19 pandemic has challenged us all, but particularly caregivers and the...
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  35.  5
    “A Raw Blessing” – Caregivers’ Experiences Providing Care to Persons Living with Dementia in the COVID-19 Pandemic.Emily A. Largent, Andrew Peterson, Kristin Harkins, Cameron Coykendall, Melanie Kleid, Maramawit Abera, Shana D. Stites, Jason Karlawish & Justin T. Clapp - 2023 - Journal of Law, Medicine and Ethics 51 (3):626-640.
    The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.
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  36.  28
    Supported Decision Making with People at the Margins of Autonomy: Response to Commentaries.Emily A. Largent, Jason Karlawish & Andrew Peterson - 2022 - American Journal of Bioethics 22 (1):W1-W4.
    Supported decision making is a model of decision making in which an adult with impaired capacity enters freely into an agreement with a closely trusted person or persons (the “s...
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  37.  33
    Public Perspectives on COVID-19 Vaccine Prioritization.Govind Persad, Ezekiel J. Emanuel, Samantha Sangenito, Aaron Glickman, Steven Phillips & Emily A. Largent - 2021 - JAMA Network Open 4 (4):e217943.
    In this survey study of 4735 US adults, respondents of all demographic and political affiliations agreed with prioritizing COVID-19 vaccine access for health care workers, adults of any age with serious comorbid conditions, frontline workers (eg, teachers and grocery workers), and Black, Hispanic, Native American, and other communities that have been disproportionately affected by COVID-19. Older adult respondents were less likely than younger respondents to list healthy people older than 65 years as 1 of their top 4 priority groups. These (...)
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  38.  20
    Plumbing the Depths of Ethical Payment for Research Participation.Holly Fernandez Lynch, Thomas C. Darton, Jae Levy, Frank McCormick, Ubaka Ogbogu, Ruth O. Payne, Alvin E. Roth, Akilah Jefferson Shah, Thomas Smiley & Emily A. Largent - 2021 - American Journal of Bioethics 21 (5):W8-W11.
    The peer commentaries on our Target Article, “Promoting Ethical Payment in Human Infection Challenge Studies,” offer a number of insights that will help advance the co...
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  39.  25
    Functionalism, Formalism, and Undue Influence.Emily Largent - 2017 - American Journal of Bioethics 17 (12):23-25.
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  40.  28
    Incorporating Health Equity Into COVID-19 Reopening Plans: Policy Experimentation in California.Emily A. Largent, Govind Persad, Michelle M. Mello, Danielle M. Wenner, Daniel B. Kramer, Brownsyne Tucker Edmonds & Monica Peek - 2021 - American Journal of Public Health 1 (1):e1-e8.
    California has focused on health equity in the state’s COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California’s 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier’s test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged communities, and counties with more than 106 000 residents must (...)
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  41. Losing our minds? direct-to-consumer genetic testing and Alzheimer's disease.Emily Largent - 2021 - In I. Glenn Cohen, Nita A. Farahany, Henry T. Greely & Carmel Shachar (eds.), Consumer genetic technologies: ethical and legal considerations. New York, NY: Cambridge University Press.
  42.  26
    The Legality and Ethics of Mandating COVID-19 Vaccination.Emily A. Largent & Franklin G. Miller - 2021 - Perspectives in Biology and Medicine 64 (4):479-493.
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  43. The Many vs. the Few Reply.Emily Largent & Norman Daniels - 2012 - Hastings Center Report 42 (5):8-9.
     
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  44.  5
    Tax the Rich! Tax the Research Participants?Emily A. Largent - 2023 - Journal of Law, Medicine and Ethics 51 (2):426-428.
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  45. US public attitudes toward COVID-19 vaccine mandates.Emily Largent, Persad A., Sangenito Govind, Glickman Samantha, Boyle Aaron, Emanuel Connor & J. Ezekiel - 2020 - JAMA Netw. Open 3 (12):e2033324.
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  46.  42
    Mountains and Molehills When Using Social Media as a Research Support Tool.Holly Fernandez Lynch & Emily A. Largent - 2019 - American Journal of Bioethics 19 (6):64-66.
    Volume 19, Issue 6, June 2019, Page 64-66.
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  47.  29
    Mutual Obligations in Research and Withholding Payment From Deceptive Participants.Holly Fernandez Lynch, Luke Gelinas & Emily A. Largent - 2018 - American Journal of Bioethics 18 (4):85-87.
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