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  1. A Just Genomics Needs an ELSI of Translation.Meghan C. Halley, Nate W. Olson, Euan A. Ashley, Aaron J. Goldenberg & Holly K. Tabor - 2024 - Hastings Center Report 54 (S2).
    The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit (...)
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  • The Social Value Misconception in Clinical Research.Jake Earl, Liza Dawson & Annette Rid - forthcoming - American Journal of Bioethics.
    Clinical researchers should help respect the autonomy and promote the well-being of prospective study participants by helping them make voluntary, informed decisions about enrollment. However, participants often exhibit poor understanding of important information about clinical research. Bioethicists have given special attention to “misconceptions” about clinical research that can compromise participants’ decision-making, most notably the “therapeutic misconception.” These misconceptions typically involve false beliefs about a study’s purpose, or risks or potential benefits for participants. In this article, we describe a misconception involving (...)
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  • Defending and Defining Environmental Responsibilities for the Health Research Sector.Bridget Pratt - 2024 - Science and Engineering Ethics 30 (3):1-21.
    Six planetary boundaries have already been exceeded, including climate change, loss of biodiversity, chemical pollution, and land-system change. The health research sector contributes to the environmental crisis we are facing, though to a lesser extent than healthcare or agriculture sectors. It could take steps to reduce its environmental impact but generally has not done so, even as the planetary emergency worsens. So far, the normative case for why the health research sector should rectify that failure has not been made. This (...)
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  • Social Value, Beneficial Information, and Obligations to Participants in a Trial of Novel COVID-19 Vaccines.Jake Earl & Liza Dawson - 2023 - American Journal of Bioethics 23 (10):126-128.
    The case describes researchers who are seeking ethics guidance on communicating with participants in a phase-1 COVD-19 vaccine trial about FDA-authorized COVID-19 vaccines (Wilfond, Duenas, and Johnson 2023). The researchers want help choosing among three options they have identified for encouraging participants to obtain one of the authorized vaccines. We argue that research ethics consultants should consider going beyond this question to address another ethics concern the researchers might have overlooked.
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  • For the Common Good: Philosophical Foundations of Research Ethics.Alex John London - 2021 - New York, NY, USA: Oxford University Press.
    The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers of research but largely (...)
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  • Risk, double effect and the social benefit requirement.Robert C. Hughes - 2021 - Journal of Medical Ethics 47 (12):e29-e29.
    Many ethicists maintain that medical research on human subjects that presents no prospect of direct medical benefit must have a prospect of social benefit to be ethical. Payment is not the sort of benefit that justifies exposing subjects to risk. Alan Wertheimer has raised a serious challenge to this view, pointing out that in industry, social value is not considered necessary to make dangerous jobs ethical. This article argues that Wertheimer was correct to think that the ethics of hazard pay (...)
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  • Redistributing Fair Subject Selection.Kirstin Borgerson - 2020 - American Journal of Bioethics 20 (2):25-27.
    Volume 20, Issue 2, February 2020, Page 25-27.
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  • Context is Needed When Assessing Fair Subject Selection.G. Owen Schaefer - 2020 - American Journal of Bioethics 20 (2):20-22.
    Volume 20, Issue 2, February 2020, Page 20-22.
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  • Exploitation and International Clinical Research: The Disconnect Between Goals and Policy.Danielle M. Wenner - 2018 - In David Boonin (ed.), Palgrave Handbook of Philosophy and Public Policy. Cham: Palgrave Macmillan. pp. 563-574.
    A growing proportion of clinical research funded by pharmaceutical companies, high-income country research agencies, and not-for-profit funders is conducted in low- and middle-income settings. Disparities in wealth and access to healthcare between the populations where new interventions are often tested and those where many of them are ultimately marketed raise concerns about exploitation. This chapter examines several ethical requirements frequently advanced as mechanisms for protecting research subjects in underserved communities from exploitation and evaluates the effectiveness of those mechanisms as responses (...)
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  • Paying People to Risk Life or Limb.Robert C. Hughes - 2019 - Business Ethics Quarterly 29 (3):295-316.
    Does the content of a physically dangerous job affect the moral permissibility of hiring for that job? To what extent may employers consider costs in choosing workplace safety measures? Drawing on Kantian ethical theory, this article defends two strong ethical standards of workplace safety. First, the content of a hazardous job does indeed affect the moral permissibility of offering it. Unless employees need hazard pay to meet basic needs, it is permissible to offer a dangerous job only if prospective employees (...)
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  • Locating the Source(s) of the Social Value Requirement(s).David Wendler - 2018 - Hastings Center Report 48 (6):33-35.
    In this issue of the Hastings Center Report, Danielle Wenner looks at a few prominent analyses of the social value requirement for clinical research, claiming that they are all based on what she calls a transactional model of research ethics. She argues that the transactional model fails to provide a secure foundation for the social value requirement, and then, appealing to John Rawls, she argues that a more secure foundation lies in the principles of social justice. Wenner's attempt to locate (...)
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  • Promoting Data Sharing: The Moral Obligations of Public Funding Agencies.Christian Wendelborn, Michael Anger & Christoph Schickhardt - 2024 - Science and Engineering Ethics 30 (4):1-31.
    Sharing research data has great potential to benefit science and society. However, data sharing is still not common practice. Since public research funding agencies have a particular impact on research and researchers, the question arises: Are public funding agencies morally obligated to promote data sharing? We argue from a research ethics perspective that public funding agencies have several pro tanto obligations requiring them to promote data sharing. However, there are also pro tanto obligations that speak against promoting data sharing in (...)
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  • Ethical challenges of clinical trials with a repurposed drug in outbreaks.Katarzyna Klas, Karolina Strzebonska & Marcin Waligora - 2023 - Medicine, Health Care and Philosophy 26 (2):233-241.
    Drug repurposing is a strategy of identifying new potential uses for already existing drugs. Many researchers adopted this method to identify treatment or prevention during the COVID-19 pandemic. However, despite the considerable number of repurposed drugs that were evaluated, only some of them were labeled for new indications. In this article, we present the case of amantadine, a drug commonly used in neurology that attracted new attention during the COVID-19 outbreak. This example illustrates some of the ethical challenges associated with (...)
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  • Pricing Medicine Fairly.Robert C. Hughes - 2020 - Philosophy of Management 19 (4):369-385.
    Recently, dramatic price increases by several pharmaceutical companies have provoked public outrage. These scandals raise questions both about how pharmaceutical firms should be regulated and about how pharmaceutical executives ethically ought to make pricing decisions when drug prices are largely unregulated. Though there is an extensive literature on the regulatory question, the ethical question has been largely unexplored. This article defends a Kantian approach to the ethics of pharmaceutical pricing in an unregulated market. To the extent possible, pharmaceutical companies must (...)
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  • Which Benefits Can Justify Risks in Research?Tessa I. van Rijssel, Ghislaine J. M. W. van Thiel, Helga Gardarsdottir, Johannes J. M. van Delden & on Behalf of the Trials@Home Consortium - forthcoming - American Journal of Bioethics:1-11.
    Research ethics committees (RECs) evaluate whether the risk-benefit ratio of a study is acceptable. Decentralized clinical trials (DCTs) are a novel approach for conducting clinical trials that potentially bring important benefits for research, including several collateral benefits. The position of collateral benefits in risk-benefit assessments is currently unclear. DCTs raise therefore questions about how these benefits should be assessed. This paper aims to reconsider the different types of research benefits, and their position in risk-benefit assessments. We first propose a categorization (...)
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  • Reconceptualising risk–benefit analyses: the case of HIV cure research.Robert Steel - 2020 - Journal of Medical Ethics 46 (3):212-219.
    Modern antiretroviral therapies are capable of suppressing HIV in the bloodstream to undetectable levels. Nonetheless, people living with HIV must maintain lifelong adherence to ART to avoid the re-emergence of the infection. So despite the existence and efficacy of ART, there is still substantial interest in development of a cure. But HIV cure trials can be risky, their success is as of yet unlikely, and the medical gain of being cured is limited against a baseline of ART access. The medical (...)
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  • Ethical Vaccine Recommendations in the Context of Tenuous Data: Honesty is the Best Policy.Ross McKinney - 2023 - American Journal of Bioethics 23 (10):128-130.
    This case (Wilfond, Duenas, and Johnson 2023) asks us to consider the ongoing obligations, if any, for researchers who have enrolled people into clinical trials. This issue can be particularly chal...
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  • Judging the social value of controlled human infection studies.Annette Rid & Meta Roestenberg - 2020 - Bioethics 34 (8):749-763.
    In controlled human infection (CHI) studies, investigators deliberately infect healthy individuals with pathogens in order to study mechanisms of disease or obtain preliminary efficacy data on investigational vaccines and medicines. CHI studies offer a fast and cost‐effective way of generating new scientific insights, prioritizing investigational products for clinical testing, and reducing the risk that large numbers of people are exposed to ineffective or harmful substances in research or in practice. Yet depending on the pathogen, CHI studies can involve significant risks (...)
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  • Participation in a single-blinded pediatric therapeutic strategy study for juvenile idiopathic arthritis: are parents and patient-participants in equipoise?Petra C. E. Hissink Muller, Bahar Yildiz, Cornelia F. Allaart, Danielle M. C. Brinkman, Marion van Rossum, Lisette W. A. van Suijlekom-Smit, J. Merlijn van den Berg, Rebecca ten Cate & Martine C. de Vries - 2018 - BMC Medical Ethics 19 (1):1-9.
    Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared preferences of (...)
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  • Collaborative partnership and the social value of clinical research: a qualitative secondary analysis.Sanna-Maria Nurmi, Arja Halkoaho, Mari Kangasniemi & Anna-Maija Pietilä - 2017 - BMC Medical Ethics 18 (1):57.
    Protecting human subjects from being exploited is one of the main ethical challenges for clinical research. However, there is also a responsibility to protect and respect the communities who are hosting the research. Recently, attention has focused on the most efficient way of carrying out clinical research, so that it benefits society by providing valuable research while simultaneously protecting and respecting the human subjects and the communities where the research is conducted. Collaboration between partners plays an important role and that (...)
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  • Fair Inclusion and the Pursuit of Robustly Generalizable Clinically Relevant Knowledge.Ana S. Iltis - 2020 - American Journal of Bioethics 20 (2):27-30.
    Volume 20, Issue 2, February 2020, Page 27-30.
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  • The Social Value Requirement in Research: From the Transactional to the Basic Structure Model of Stakeholder Obligations.Danielle M. Wenner - 2018 - Hastings Center Report 48 (6):25-32.
    It has long been taken for granted that clinical research involving human subjects is ethical only if it holds out the prospect of producing socially valuable knowledge. Recently, this social value requirement has come under scrutiny, with prominent ethicists arguing that the social value requirement cannot be substantiated as an ethical limit on clinical research, and others attempting to offer new support. In this paper, I argue that both criticisms and existing defenses of the social value requirement are predicated on (...)
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  • Enhancing social value considerations in prioritising publicly funded biomedical research: the vital role of peer review.Katherine W. Saylor & Steven Joffe - 2024 - Journal of Medical Ethics 50 (4):253-257.
    The main goal of publicly funded biomedical research is to generate social value through the creation and application of knowledge that can improve the well-being of current and future people. Prioritising research with the greatest potential social value is crucial for good stewardship of limited public resources and ensuring ethical involvement of research participants. At the National Institutes of Health (NIH), peer reviewers hold the expertise and responsibility for social value assessment and resulting prioritisation at the project level. However, previous (...)
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