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  1. Navigating Ethical Challenges of Conducting Randomized Clinical Trials on COVID-19.Dan Kabonge Kaye - 2022 - Philosophy, Ethics, and Humanities in Medicine 17 (1):1-11.
    BackgroundThe contemporary frameworks for clinical research require informed consent for research participation that includes disclosure of material information, comprehension of disclosed information and voluntary consent to research participation. There is thus an urgent need to test, and an ethical imperative, to test, modify or refine medications or healthcare plans that could reduce patient morbidity, lower healthcare costs or strengthen healthcare systems.MethodsConceptual review.DiscussionAlthough some allocation principles seem better than others, no single moral principle allocates interventions justly, necessitating combining the moral principles (...)
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  • Ethical Issues in Biomedical Research Using Electronic Health Records: A Systematic Review.Jan Piasecki, Ewa Walkiewicz-Żarek, Justyna Figas-Skrzypulec, Anna Kordecka & Vilius Dranseika - 2021 - Medicine, Health Care and Philosophy 24 (4):633-658.
    Digitization of a health record changes its accessibility. An electronic health record can be accessed by multiple authorized users. Health information from EHRs contributes to learning healthcare systems’ development. The objective of this systematic review is to answer a question: What are ethical issues concerning research using EHRs in the literature? We searched Medline Ovid, Embase and Scopus for publications concerning ethical issues of research use of EHRs. We employed the constant comparative method to retrieve common ethical themes. We descriptively (...)
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  • Motives of Contributing Personal Data for Health Research: (Non-)Participation in a Dutch Biobank.R. Broekstra, E. L. M. Maeckelberghe, J. L. Aris-Meijer, R. P. Stolk & S. Otten - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...)
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  • Informed Consent, Error and Suspending Ignorance: Providing Knowledge or Preventing Error?Arnon Keren & Ori Lev - 2022 - Ethical Theory and Moral Practice 25 (2):351-368.
    The standard account of informed consent has recently met serious criticism, focused on the mismatch between its implications and widespread intuitions about the permissibility of conducting research and providing treatment under conditions of partial knowledge. Unlike other critics of the standard account, we suggest an account of the relations between autonomy, ignorance, and valid consent that avoids these implausible implications while maintaining the standard core idea, namely, that the primary purpose of the disclosure requirement of informed consent is to prevent (...)
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  • The Timing of Research Consent.Benjamin Sachs - 2021 - Ethical Theory and Moral Practice 24 (4):1033-1046.
    This essay is about the timing of research consent, a process that involves participants being given information about, among other things, upcoming research interventions and then being invited to waive their claims against those interventions being undertaken. The standard practice, as regards timing, is as follows: participants are invited to waive all their claims at a single moment in time, and that point in time immediately follows the information-provision. I argue that there we’re not justified in keeping to this practice. (...)
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  • Informed Consent: A Matter of Aspiration Since 1966.Sarah Wieten, Jacob Blythe & David Magnus - 2019 - American Journal of Bioethics 19 (5):3-5.
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  • Informed Consent, Understanding, and Trust.David B. Resnik - 2021 - American Journal of Bioethics 21 (5):61-63.
    Valid Informed consent to medical treatment or research participation has traditionally been viewed as consisting of the following requirements: the person has t...
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  • What Information and the Extent of Information Research Participants Need in Informed Consent Forms: A Multi-Country Survey.Subhash Yadav, Phanthipha Wongwai, Renu Wickremasinghe, Tri Wibawa, Jayanie Weeratna, Peter S. K. Tok, Thipaporn Tharavanij, Mei M. Tew, Leh H. Teng, Ju F. Tay, Nadirah Sulaiman, Sivasangari Subramaniam, Wasanthi Subasingha, Shalini Sri Ranganathan, Nilakshi Samaranayake, Ahmad H. Sadewa, Jebananthy A. Pradeepan, Kim H. Ooi, Maisarah Noor, Elanngovan Nagandran, Kopalasuntharam Muhunthan, Nurain Mohd Noor, Siti M. Md Ali, Jacinto B. V. Mantaring, Fatihah Mahmud, Xin J. Lim, Wei H. Lim, Ranjith Kumarasiri, Paul P. Kumaran, Ragini Kulkarni, Bing-Ling Kueh, Kian K. Kong, Sattian Kollanthavelu, Panduka Karunanayake, Suman Kanungo, Madarina Julia, Pavithra Janarsan, Mohd F. A. Jamil, Narwani Hussin, Mohammad Hakimi, Irene Gitek, Manori Gamage, Melvyn Y. C. Chin, Shoen C. Chiew, Madawa Chandratilake, Beng Z. Chan, Aisyah Ali, Liyana Ahamad Fouzi, Murnilina Abdul Malek, Kwanchanok Yimtae, Chih-Shung Wong, Chandanie Wanigatunge, Eti N. Sholikhah, Roli Mathur, Gurpreet Kaur, Edlyn B. Jimenez & T. - 2018 - BMC Medical Ethics 19 (1):1-11.
    Background The use of lengthy, detailed, and complex informed consent forms is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in (...)
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  • 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.
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  • Instrumentalist Analyses of the Functions of Ethics Concept-Principles: A Proposal for Synergetic Empirical and Conceptual Enrichment.Eric Racine, M. Ariel Cascio, Marjorie Montreuil & Aline Bogossian - 2019 - Theoretical Medicine and Bioethics 40 (4):253-278.
    Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three (...)
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  • From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
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  • The Past, Present, and Future of Informed Consent in Research and Translational Medicine.Susan M. Wolf, Ellen Wright Clayton & Frances Lawrenz - 2018 - Journal of Law, Medicine and Ethics 46 (1):7-11.
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  • Reimagining the Goal of Informed Consent to Help Patients Make Decisions About Research.Benjamin S. Wilfond & Kathryn M. Porter - 2020 - American Journal of Bioethics 20 (5):22-23.
    Volume 20, Issue 5, June 2020, Page 22-23.
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  • Functionalism, Formalism, and Undue Influence.Emily Largent - 2017 - American Journal of Bioethics 17 (12):23-25.
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  • A Matter of Heart: Beyond Informed Consent.Haavi Morreim - 2017 - American Journal of Bioethics 17 (12):18-20.
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  • Instrumentalist Analyses of the Functions of Health Ethics Concepts and Principles: Methodological Guideposts.Eric Racine, M. Ariel Cascio & Aline Bogossian - 2017 - American Journal of Bioethics 17 (12):16-18.
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  • Demonstrating ‘Respect for Persons’ in Clinical Research: Findings From Qualitative Interviews with Diverse Genomics Research Participants.Stephanie A. Kraft, Erin Rothwell, Seema K. Shah, Devan M. Duenas, Hannah Lewis, Kristin Muessig, Douglas J. Opel, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - Journal of Medical Ethics 47 (12):8-8.
    The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...)
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  • Broad Consent for Biobanks is Best – Provided It is Also Deep.Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2019 - BMC Medical Ethics 20 (1):1-12.
    As biobank research has become increasingly widespread within biomedical research, study-specific consent to each study, a model derived from research involving traditional interventions on human subjects, has for the sake of feasibility gradually given way to alternative consent models which do not require consent for every new study. Besides broad consent these models include tiered, dynamic, and meta-consent. However, critics have pointed out that it is normally not known at the time of enrolment in what ways samples deposited in a (...)
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  • Informed Consent: What Must Be Disclosed and What Must Be Understood?Joseph Millum & Danielle Bromwich - 2021 - American Journal of Bioethics 21 (5):46-58.
    Over the last few decades, multiple studies have examined the understanding of participants in clinical research. They show variable and often poor understanding of key elements of disclosure, such as expected risks and the experimental nature of treatments. Did the participants in these studies give valid consent? According to the standard view of informed consent they did not. The standard view holds that the recipient of consent has a duty to disclose certain information to the profferer of consent because valid (...)
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  • Ethical Challenges Arising in the COVID-19 Pandemic: An Overview From the Association of Bioethics Program Directors (ABPD) Task Force.Amy L. McGuire, Mark P. Aulisio, F. Daniel Davis, Cheryl Erwin, Thomas D. Harter, Reshma Jagsi, Robert Klitzman, Robert Macauley, Eric Racine, Susan M. Wolf, Matthew Wynia & Paul Root Wolpe - 2020 - American Journal of Bioethics 20 (7):15-27.
    The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...
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  • The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease.Stacy Desine, Brittany M. Hollister, Khadijah E. Abdallah, Anitra Persaud, Sara Chandros Hull & Vence L. Bonham - 2020 - AJOB Empirical Bioethics 11 (4):195-207.
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  • Randomised Controlled Trials in Medical AI: Ethical Considerations.Thomas Grote - forthcoming - Journal of Medical Ethics:medethics-2020-107166.
    In recent years, there has been a surge of high-profile publications on applications of artificial intelligence systems for medical diagnosis and prognosis. While AI provides various opportunities for medical practice, there is an emerging consensus that the existing studies show considerable deficits and are unable to establish the clinical benefit of AI systems. Hence, the view that the clinical benefit of AI systems needs to be studied in clinical trials—particularly randomised controlled trials —is gaining ground. However, an issue that has (...)
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  • Respecting Donor-Recipient Relationships in Research Decision-Making Commentary On: When Living Donor and Kidney Transplant Recipient Are Both Research Subjects.Stephanie A. Kraft - 2021 - American Journal of Bioethics 21 (4):112-114.
    Ethical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...
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  • Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian J. Koplin - 2021 - AJOB Empirical Bioethics 12 (1):12-23.
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  • Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study.Stephanie A. Kraft, Kathryn M. Porter, Devan M. Duenas, Claudia Guerra, Galen Joseph, Sandra Soo-Jin Lee, Kelly J. Shipman, Jake Allen, Donna Eubanks, Tia L. Kauffman, Nangel M. Lindberg, Katherine Anderson, Jamilyn M. Zepp, Marian J. Gilmore, Kathleen F. Mittendorf, Elizabeth Shuster, Kristin R. Muessig, Briana Arnold, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - AJOB Empirical Bioethics 12 (1):1-11.
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  • Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian K. Koplin - forthcoming - Ajob Empirical Bioethics:1-12.
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  • Response to Commentaries.Tom L. Beauchamp & James F. Childress - 2020 - Journal of Medicine and Philosophy 45 (4-5):560-579.
    After expressing our gratitude to the commentators for their valuable analyses and assessments of Principles of Biomedical Ethics, we respond to several particular critiques raised by the commentators under the following rubrics: the compatibility of different sets of principles and rules; challenges to the principle of respect for autonomy; connecting principles to cases and resolving their conflicts; the value of and compatibility of virtues and principles; common morality theory; and moral status. We point to areas where we see common agreement (...)
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  • A Model to Be Emulated.Kevin P. Weinfurt - 2020 - American Journal of Bioethics 20 (5):18-20.
    Volume 20, Issue 5, June 2020, Page 18-20.
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  • Partnering With Research Staff Members to Bridge Gaps in Consent.Emily E. Anderson - 2020 - American Journal of Bioethics 20 (5):28-30.
    Volume 20, Issue 5, June 2020, Page 28-30.
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  • Partnering With Patients to Bridge Gaps in Consent for Acute Care Research.Neal W. Dickert, Amanda Michelle Bernard, JoAnne M. Brabson, Rodney J. Hunter, Regina McLemore, Andrea R. Mitchell, Stephen Palmer, Barbara Reed, Michele Riedford, Raymond T. Simpson, Candace D. Speight, Tracie Steadman & Rebecca D. Pentz - 2020 - American Journal of Bioethics 20 (5):7-17.
    Clinical trials for acute conditions such as myocardial infarction and stroke pose challenges related to informed consent due to time limitations, stress, and severe illness. Consent processes shou...
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  • Consent for Acute Care Research and the Regulatory “Gray Zone”.Laura M. Beskow, Christopher J. Lindsell & Todd W. Rice - 2020 - American Journal of Bioethics 20 (5):26-28.
    Volume 20, Issue 5, June 2020, Page 26-28.
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  • Government Policy Experiments and Informed Consent.Douglas MacKay & Averi Chakrabarti - 2019 - Public Health Ethics 12 (2):188-201.
    Governments are increasingly making use of field experiments to evaluate policy interventions in the spheres of education, public health and welfare. However, the research ethics literature is largely focused on the clinical context, leaving investigators, institutional review boards and government agencies with few resources to draw on to address the ethical questions they face regarding such experiments. In this article, we aim to help address this problem, investigating the conditions under which informed consent is required for ethical policy research conducted (...)
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  • Does Consent Form Follow Function?Charles Weijer, Jamie Brehaut & Cory E. Goldstein - 2017 - American Journal of Bioethics 17 (12):29-31.
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  • Germline Genome Editing and the Functions of Consent.Robert Ranisch - 2017 - American Journal of Bioethics 17 (12):27-29.
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  • A Pragmatic Trial for Emergency Medical Service Providers’ Prehospital Response to Suidality: Consent Is Not Essential, but Limited Patient Engagement May Be Meaningful.Neal W. Dickert - 2019 - American Journal of Bioethics 19 (10):105-107.
    Volume 19, Issue 10, October 2019, Page 105-107.
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  • Understanding as an Ethical Aspiration in an Era of Digital Technology-Based Communication: An Analysis of Informed Consent Functions.Stephanie A. Kraft, Nanibaa’ A. Garrison & Benjamin S. Wilfond - 2019 - American Journal of Bioethics 19 (5):34-36.
    Volume 19, Issue 5, May 2019, Page 34-36.
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  • Ignorance Isn’T Bliss: Retaining a Meaningful Comprehension Requirement for Consent to Research.Paul S. Appelbaum - 2019 - American Journal of Bioethics 19 (5):22-24.
    Volume 19, Issue 5, May 2019, Page 22-24.
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  • The Value of Consent for Clinical Research Does Not Always Hinge on Understanding.Neal W. Dickert - 2019 - American Journal of Bioethics 19 (5):20-22.
    Volume 19, Issue 5, May 2019, Page 20-22.
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  • The Importance of Listening to Patients and to Evidence Regarding Consent for Research.Neal W. Dickert - 2019 - American Journal of Bioethics 19 (4):23-25.
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  • Older Teens’ Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study.Richard F. Ittenbach, Jeremy J. Corsmo, Robert V. Miller & Leslie L. Korbee - 2019 - Ajob Empirical Bioethics 10 (3):173-181.
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  • Applicability of a Function-Based Approach to Informed Consent in International Settings.Henry J. Silverman & Shahd Osman - 2017 - American Journal of Bioethics 17 (12):25-27.
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  • A Functional Approach to Assessing Consent for Biospecimen Research.Holly Fernandez Lynch - 2017 - American Journal of Bioethics 17 (12):20-23.
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  • Do Not Forget the Right to Withdraw!Søren Holm & Thomas Ploug - 2017 - American Journal of Bioethics 17 (12):14-15.
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  • Attending to the Interrelatedness of the Functions of Consent.Benjamin S. Wilfond & Stephanie A. Kraft - 2017 - American Journal of Bioethics 17 (12):12-13.
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