58 found
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  1.  35
    False Hopes and Best Data: Consent to Research and the Therapeutic Misconception.Paul S. Appelbaum, Loren H. Roth, Charles W. Lidz, Paul Benson & William Winslade - 1987 - Hastings Center Report 17 (2):20-24.
  2.  11
    Patients’ Beliefs About Deep Brain Stimulation for Treatment-Resistant Depression.Ryan E. Lawrence, Catharine R. Kaufmann, Ravi B. DeSilva & Paul S. Appelbaum - 2018 - American Journal of Bioethics Neuroscience 9 (4):210-218.
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  3.  13
    The Precision Medicine Nation.Maya Sabatello & Paul S. Appelbaum - 2017 - Hastings Center Report 47 (4):19-29.
    The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. (...)
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  4.  51
    Voluntariness of Consent to Research: A Conceptual Model.Paul S. Appelbaum, Charles W. Lidz & Robert Klitzman - 2009 - Hastings Center Report 39 (1):30-39.
    Voluntariness of consent to research has not been sufficiently explored through empirical research. The aims of this study were to develop a more comprehensive approach to assessing voluntariness and to generate preliminary data on the extent and correlates of limitations on voluntariness. We developed a questionnaire to evaluate subjects’ reported motivations and constraints on voluntariness. 88 subjects in five different areas of clinical research—substance abuse, cancer, HIV, interventional cardiology, and depression—were assessed. Subjects reported a variety of motivations for participation. Offers (...)
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  5.  1
    Therapeutic Misconception in Clinical Research: Frequency and Risk Factors.Paul S. Appelbaum, Charles W. Lidz & Thomas Grisso - 2004 - IRB: Ethics & Human Research 26 (2):1.
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  6.  48
    The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations.Gail E. Henderson, Susan M. Wolf, Kristine J. Kuczynski, Steven Joffe, Richard R. Sharp, D. Williams Parsons, Bartha M. Knoppers, Joon-Ho Yu & Paul S. Appelbaum - 2014 - Journal of Law, Medicine and Ethics 42 (3):344-355.
    Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...)
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  7.  15
    Unrealistic Optimism in Early-Phase Oncology Trials.Lynn A. Jansen, Paul S. Appelbaum, William Mp Klein, Neil D. Weinstein, William Cook, Jessica S. Fogel & Daniel P. Sulmasy - 2011 - IRB: Ethics & Human Research 33 (1):1.
    Unrealistic optimism is a bias that leads people to believe, with respect to a specific event or hazard, that they are more likely to experience positive outcomes and/or less likely to experience negative outcomes than similar others. The phenomenon has been seen in a range of health-related contexts—including when prospective participants are presented with the risks and benefits of participating in a clinical trial. In order to test for the prevalence of unrealistic optimism among participants of early-phase oncology trials, we (...)
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  8.  18
    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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  9.  43
    Clarifying the Ethics of Clinical Research: A Path Toward Avoiding the Therapeutic Misconception.Paul S. Appelbaum - 2002 - American Journal of Bioethics 2 (2):22 – 23.
    (2002). Clarifying the Ethics of Clinical Research: A Path toward Avoiding the Therapeutic Misconception. The American Journal of Bioethics: Vol. 2, No. 2, pp. 22-23.
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  10.  80
    Ought We to Require Emotional Capacity as Part of Decisional Competence?Paul S. Appelbaum - 1998 - Kennedy Institute of Ethics Journal 8 (4):377-387.
  11.  27
    Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.
  12.  12
    Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings.Maya Sabatello & Paul S. Appelbaum - 2016 - Journal of Law, Medicine and Ethics 44 (2):292-308.
    Whole genome and exome sequencing techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, (...)
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  13.  16
    Who's Afraid of Psychiatric Genomics?Paul S. Appelbaum - 2017 - American Journal of Bioethics 17 (4):15-17.
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  14. [Drug Free Research in Schizophrenia].A. E. Shamoo & Paul S. Appelbaum - forthcoming - IRB: Ethics & Human Research.
  15.  44
    Appreciating Anorexia: Decisional Capacity and the Role of Values.Thomas Grisso & Paul S. Appelbaum - 2007 - Philosophy, Psychiatry, and Psychology 13 (4):293-297.
  16.  44
    Diagnosing Consciousness: Neuroimaging, Law, and the Vegetative State.Carl E. Fisher & Paul S. Appelbaum - 2010 - Journal of Law, Medicine and Ethics 38 (2):374-385.
    In this paper, we review recent neuroimaging investigations of disorders of consciousness and different disciplines' understanding of consciousness itself. We consider potential tests of consciousness, their legal significance, and how they map onto broader themes in U.S. statutory law pertaining to advance directives and surrogate decision-making. In the process, we outline a taxonomy of themes to illustrate and clarify the variance in state-law definitions of consciousness. Finally, we discuss broader scientific, ethical, and legal issues associated with the advent of neuroimaging (...)
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  17.  18
    Diagnosing Consciousness: Neuroimaging, Law, and the Vegetative State.Carl E. Fisher & Paul S. Appelbaum - 2010 - Journal of Law, Medicine and Ethics 38 (2):374-385.
    Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on the basis (...)
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  18.  25
    Re-Evaluating the Therapeutic Misconception: Response to Miller and Joffe.Paul S. Appelbaum & Charles W. Lidz - 2006 - Kennedy Institute of Ethics Journal 16 (4):367-373.
    : Responding to the paper by Miller and Joffe, we review the development of the concept of therapeutic misconception (TM). Our concerns about TM's impact on informed consent do not derive from the belief that research subjects have poorer outcomes than persons receiving ordinary clinical care. Rather, we believe that subjects with TM cannot give an adequate informed consent to research participation, which harms their dignitary interests and their abilities to make meaningful decisions. Ironically, Miller and Joffe's approach ends up (...)
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  19.  41
    The Silent Majority: Who Speaks at IRB Meetings.Philip J. Candilis, Charles W. Lidz, Paul S. Appelbaum, Robert M. Arnold, William P. Gardner, Suzanne Myers, Albert J. Grudzinskas Jr & Lorna J. Simon - 2012 - IRB: Ethics & Human Research 34 (4):15-20.
    Institutional review boards are almost universally considered to be overworked and understaffed. They also require substantial commitments of time and resources from their members. Although some surveys report average IRB memberships of 15 people or more, federal regulations require only five. We present data on IRB meetings at eight of the top 25 academic medical centers in the United States funded by the National Institutes of Health. These data indicate substantial contributions from primary reviewers and chairs during protocol discussions but (...)
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  20.  2
    Nature Vs. Nurture in Precision Education: Insights of Parents and the Public.Maya Sabatello, Bree Martin, Thomas Corbeil, Seonjoo Lee, Bruce G. Link & Paul S. Appelbaum - 2022 - AJOB Empirical Bioethics 13 (2):79-88.
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  21.  15
    On What We Have Learned and Still Need to Learn About the Psychosocial Impacts of Genetic Testing.Erik Parens & Paul S. Appelbaum - 2019 - Hastings Center Report 49 (S1):S2-S9.
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  22.  33
    Psychopharmacology and the Power of Narrative.Paul S. Appelbaum - 2005 - American Journal of Bioethics 5 (3):48 – 49.
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  23.  23
    Clinical Ethics Versus Clinical Research.Paul S. Appelbaum & Charles W. Lidz - 2006 - American Journal of Bioethics 6 (4):53 – 55.
  24.  2
    The Doctrine of Informed Consent Doesn’T Need Modification for Supported Decision Making.Manuel Trachsel & Paul S. Appelbaum - 2021 - American Journal of Bioethics 21 (11):27-29.
    In their fine overview of supported decision making for persons with dynamic cognitive and functional impairments “at the margins of autonomy,” Peterson, Karlawish, and Largent query whether...
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  25.  30
    Twenty-Five Years of Therapeutic Misconception.Paul S. Appelbaum & Charles W. Lidz - 2008 - Hastings Center Report 38 (2):5-6.
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  26.  27
    Perceptions of Control and Unrealistic Optimism in Early-Phase Cancer Trials.Lynn A. Jansen, Daruka Mahadevan, Paul S. Appelbaum, William M. P. Klein, Neil D. Weinstein, Motomi Mori, Catherine Degnin & Daniel P. Sulmasy - 2018 - Journal of Medical Ethics 44 (2):121-127.
    Purpose Recent research has found unrealistic optimism among patient-subjects in early-phase oncology trials. Our aim was to investigate the cognitive and motivational factors that evoke this bias in this context. We expected perceptions of control to be a strong correlate of unrealistic optimism. Methods A study of patient-subjects enrolled in early-phase oncology trials was conducted at two sites in the USA. Respondents completed questionnaires designed to assess unrealistic optimism and several risk attribute variables that have been found to evoke the (...)
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  27.  7
    Substituted Judgment: Best Interests in Disguise.Thomas G. Gutheil & Paul S. Appelbaum - 1983 - Hastings Center Report 13 (3):8-11.
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  28.  15
    Drug-Free Research in Schizophrenia: An Overview of the Controversy.Paul S. Appelbaum - 1996 - IRB: Ethics & Human Research 18 (1):1.
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  29.  23
    Commentary: Examining the Ethics of Human Subjects Research.Paul S. Appelbaum - 1996 - Kennedy Institute of Ethics Journal 6 (3):283-287.
  30.  23
    Contact with Pharmaceutical Representatives: Where Does Prudence Lead?Paul S. Appelbaum - 2010 - American Journal of Bioethics 10 (1):11-13.
  31.  23
    Decisional Versus Performative Capacities: Not Exactly a New Idea.Paul S. Appelbaum - 2009 - American Journal of Bioethics 9 (2):31 – 32.
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  32.  13
    Honey, I Sequenced the Kids: Preventive Genomics and the Complexities of Adolescence.Maya Sabatello & Paul S. Appelbaum - 2015 - American Journal of Bioethics 15 (7):19-21.
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  33. Improving the Quality of Informed Consent to Research.Victor Schwartz & Paul S. Appelbaum - 2008 - IRB: Ethics & Human Research 30 (5):19-20.
    In order to facilitate the informed consent process, we suggest recording it. If investigators routinely recorded the consent process—including subsequent testing of participants’ comprehension and reeducation efforts—they could monitor the consent practices of their staff and determine what changes in procedure may be needed. In addition, should the adequacy of consent ever be challenged , investigators would have an easily accessible record of what had transpired. And finally, a pool of data would be created that could be accessed by researchers (...)
     
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  34.  5
    Correction and Clarification: Therapeutic Misconception in Clinical Research: Frequency and Risk Factors.Paul S. Appelbaum, Charles W. Lidz & Thomas Grisso - 2004 - IRB: Ethics & Human Research 26 (5):18.
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  35.  28
    Personalized Disclosure by Information-on-Demand: Attending to Patients' Needs in the Informed Consent Process.Gil Siegal, Richard J. Bonnie & Paul S. Appelbaum - 2012 - Journal of Law, Medicine and Ethics 40 (2):359-367.
    Obtaining informed consent has typically become a stylized ritual of presenting and signing a form, in which physicians are acting defensively and patients lack control over the content and flow of information. This leaves patients at risk both for being under-informed relative to their decisional needs and of receiving more information than they need or desire. By personalizing the process of seeking and receiving information and allowing patients to specify their desire for information in a prospective manner, we aim to (...)
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  36.  38
    Can a Theory of Voluntariness Be A Priori and Value-Free?Paul S. Appelbaum - 2011 - American Journal of Bioethics 11 (8):17-18.
    The American Journal of Bioethics, Volume 11, Issue 8, Page 17-18, August 2011.
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  37.  14
    Personalized Disclosure by Information-on-Demand: Attending to Patients' Needs in the Informed Consent Process.Gil Siegal, Richard J. Bonnie & Paul S. Appelbaum - 2012 - Journal of Law, Medicine and Ethics 40 (2):359-367.
    In an explicit attempt to reduce physician paternalism and encourage patient participation in making health care decisions, the informed consent doctrine has become a foundational precept in medical ethics and health law. The underlying ethical principle on which informed consent rests — autonomy — embodies the idea that as rational moral agents, patients should be in command of decisions that relate to their bodies and lives. The corollary obligation of physicians to respect and facilitate patient autonomy is reflected in the (...)
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  38.  7
    Case Studies: Can a Subject Consent to a 'Ulysses Contract'?Morton E. Winston, Sally M. Winston, Paul S. Appelbaum & Nancy K. Rhoden - 1982 - Hastings Center Report 12 (4):26.
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  39. Against Over-Protectionism: Riskier Decisions Require Clearer Evidence of Capacity But Don’T Call for Stricter Criteria.Paul S. Appelbaum & Manuel Trachsel - 2022 - American Journal of Bioethics 22 (10):53-55.
    In their article, Pickering, Newton-Howes, and Young argue that “a person who is considering or has already made a decision which appears seriously harmful to that person should in some case...
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  40. Empirical Assessment of Innovation in the Law of Civil Commitment: A Critique.Paul S. Appelbaum - 1985 - Journal of Law, Medicine and Ethics 13 (6):304-309.
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  41. Drug Free Research in Schizophrenia.A. E. Shamoo & Paul S. Appelbaum - 1997 - IRB: Ethics & Human Research 19 (1):10.
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  42.  24
    Parsing Neurobiological Dysfunctions in Obesity: Nosologic and Ethical Consequences.Paul S. Appelbaum, Michael J. Devlin & Carl E. Fisher - 2010 - American Journal of Bioethics 10 (12):14-16.
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  43.  17
    Intuition, Self-Reflection, and Individual Choice: Considerations for Proposed Changes to Criteria for Decisional Capacity.Paul S. Appelbaum - 2017 - Philosophy, Psychiatry, and Psychology 24 (4):325-328.
    Liberal societies are built on a foundation of personal rights, including the right to make decisions about the medical treatment that one will receive or decline to receive. So essential to the liberal project is the power of individual choice that it will be abrogated only in the most extreme situations, in which persons seem to be unable to make rational decisions and thereby to protect their interests. A small number of decision-related abilities have been identified as relevant to the (...)
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  44.  41
    Avoiding Premature Judgments About the Duty to Protect.Paul S. Appelbaum - 2011 - Ethics and Behavior 21 (1):82-83.
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  45.  21
    There Are All Kinds of Rights.Paul S. Appelbaum - 2016 - Hastings Center Report 46 (2):inside back cover-inside back co.
    Some years ago I received a phone call telling me that my mother, then in her eighties, had been found wandering the street outside her home. It was the first indication my wife and I had of Alzheimer's disease. We arrived to discover that my mother was incoherent, with the house in disorder, bills unpaid, and perishable food in the night table rather than the refrigerator. Having spent much of my career trying to improve the assessment of decisional capacity, in (...)
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  46.  15
    An Introduction to Thinking About Trustworthy Research Into the Genetics of Intelligence.Erik Parens & Paul S. Appelbaum - 2015 - Hastings Center Report 45 (S1):S2-S8.
  47.  12
    The Authors Reply.Paul S. Appelbaum, Wendy Chung, Abby J. Fyer, Robert L. Klitzman, Josue Martinez, Erik Parens, W. Nicholson Price & Cameron Waldman - 2015 - Hastings Center Report 45 (1):4-4.
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  48.  1
    Context is Everything:Psychological Data and Consent to Research.Charles Lidz & Paul S. Appelbaum - 2014 - Hastings Center Report 44 (1):35-36.
  49.  13
    Drugging a Defendant: Arm‐Chair Ethics?Paul S. Appelbaum, Thomas G. Gutheil & Michael J. Keyes - 1979 - Hastings Center Report 9 (5):4-4.
  50.  13
    Let Therapists Be Therapists, Not Police.Paul S. Appelbaum - 2013 - American Journal of Bioethics 13 (10):71 - 72.
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