57 found
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  1.  67
    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.  26
    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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  3.  36
    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.  31
    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.
    Deep brain stimulation is an experimental procedure for treatment-resistant depression. Some results show promise, but blinded trials had limited success. Ethical questions center on vulnerability: especially on whether depressed patients can weigh the risks and benefits effectively, whether depression causes “desperation,” and whether media portrayals create unrealistic hopes. We interviewed 24 psychiatric inpatients with treatment-resistant depression, qualitatively analyzing their comments. Most had minimal interest in deep brain stimulators. Some might consider them if their depression worsened, if alternatives were exhausted, or (...)
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  5.  49
    Wrestling with Social and Behavioral Genomics: Risks, Potential Benefits, and Ethical Responsibility.Michelle N. Meyer, Paul S. Appelbaum, Daniel J. Benjamin, Shawneequa L. Callier, Nathaniel Comfort, Dalton Conley, Jeremy Freese, Nanibaa' A. Garrison, Evelynn M. Hammonds, K. Paige Harden, Sandra Soo-Jin Lee, Alicia R. Martin, Daphne Oluwaseun Martschenko, Benjamin M. Neale, Rohan H. C. Palmer, James Tabery, Eric Turkheimer, Patrick Turley & Erik Parens - 2023 - Hastings Center Report 53 (S1):2-49.
    In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...)
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  6.  36
    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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  7. Ought we to require emotional capacity as part of decisional competence?Paul S. Appelbaum - 1998 - Kennedy Institute of Ethics Journal 8 (4):377-387.
    In lieu of an abstract, here is a brief excerpt of the content:Ought We to Require Emotional Capacity as Part of Decisional Competence?Paul S. Appelbaum* (bio)AbstractThe preceding commentary by Louis Charland suggests that traditional cognitive views of decision-making competence err in not taking into account patients’ emotional capacities. Examined closely, however, Charland’s argument fails to escape the cognitive bias that he condemns. However, there may be stronger arguments for broadening the focus of competence assessment to include emotional capacities, centering on (...)
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  8.  34
    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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  9.  62
    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.  65
    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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  11.  81
    Appreciating Anorexia: Decisional Capacity and the Role of Values.Thomas Grisso & Paul S. Appelbaum - 2006 - Philosophy, Psychiatry, and Psychology 13 (4):293-297.
    In lieu of an abstract, here is a brief excerpt of the content:Appreciating Anorexia:Decisional Capacity and the Role of ValuesThomas Grisso (bio) and Paul S. Appelbaum (bio)Keywordscompetence, consent, anorexia, appreciation, decision makingTan and her colleagues (2006) reported that persons with anorexia nervosa typically manifest no difficulty satisfying the criteria for abilities associated with competence to consent to or refuse treatment. Their results led them to conclude that these patients generally had no problem grasping the nature of anorexia and its possible (...)
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  12.  34
    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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  13.  47
    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.
    Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...)
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  14.  22
    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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  15.  36
    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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  16.  32
    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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  17.  37
    Who's Afraid of Psychiatric Genomics?Paul S. Appelbaum - 2017 - American Journal of Bioethics 17 (4):15-17.
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  18. [Drug Free Research in Schizophrenia].A. E. Shamoo & Paul S. Appelbaum - forthcoming - IRB: Ethics & Human Research.
  19.  53
    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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  20.  24
    Substituted Judgment: Best Interests in Disguise.Thomas G. Gutheil & Paul S. Appelbaum - 1983 - Hastings Center Report 13 (3):8-11.
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  21.  40
    Clinical ethics versus clinical research.Paul S. Appelbaum & Charles W. Lidz - 2006 - American Journal of Bioethics 6 (4):53 – 55.
  22.  65
    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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  23.  49
    Psychopharmacology and the power of narrative.Paul S. Appelbaum - 2005 - American Journal of Bioethics 5 (3):48 – 49.
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  24.  28
    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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  25.  14
    Understanding individualised genetic interventions as research-treatment hybrids.Josephine Johnston, Kathryn Tabb, Danielle Pacia, Sandra Soo-Jin Lee, Wendy K. Chung & Paul S. Appelbaum - forthcoming - Journal of Medical Ethics.
    Until recently, medicine has had little to offer most of the millions of patients suffering from rare and ultrarare genetic conditions. But the development in 2019 of Milasen, the first genetic intervention developed for and administered to a single patient suffering from an ultrarare genetic disorder, has offered hope to patients and families. In addition, Milasen raised a series of conceptual and ethical questions about how individualised genetic interventions should be developed, assessed for safety and efficacy and financially supported. The (...)
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  26.  43
    Commentary: Examining the ethics of human subjects research.Paul S. Appelbaum - 1996 - Kennedy Institute of Ethics Journal 6 (3):283-287.
    In lieu of an abstract, here is a brief excerpt of the content:Examining the Ethics of Human Subjects ResearchPaul S. Appelbaum (bio)The work of the Advisory Committee on Human Radiation Experiments confirms once again the value of combining empirical and normative approaches to problems in clinical and research ethics. The Committee, like its predecessor, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, spent relatively modest sums of money gathering targeted data to inform (...)
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  27.  42
    Twenty-five years of therapeutic misconception.Paul S. Appelbaum & Charles W. Lidz - 2008 - Hastings Center Report 38 (2):5-6.
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  28.  19
    Views of Genetic Testing for Autism Among Autism Self-Advocates: A Qualitative Study.Robert Klitzman, Ekaterina Bezborodko, Wendy K. Chung & Paul S. Appelbaum - forthcoming - AJOB Empirical Bioethics.
    Background Autism self-advocates’ views regarding genetic tests for autism are important, but critical questions about their perspectives arise.Methods We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each.Results Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves (...)
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  29.  89
    An Ethical Framework for Research Using Genetic Ancestry.Anna C. F. Lewis, Santiago J. Molina, Paul S. Appelbaum, Bege Dauda, Agustin Fuentes, Stephanie M. Fullerton, Nanibaa' A. Garrison, Nayanika Ghosh, Robert C. Green, Evelynn M. Hammonds, Janina M. Jeff, David S. Jones, Eimear E. Kenny, Peter Kraft, Madelyn Mauro, Anil P. S. Ori, Aaron Panofsky, Mashaal Sohail, Benjamin M. Neale & Danielle S. Allen - 2023 - Perspectives in Biology and Medicine 66 (2):225-248.
    ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...)
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  30.  33
    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):2-9.
    Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, (...)
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  31.  53
    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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  32.  38
    Contact with Pharmaceutical Representatives: Where Does Prudence Lead?Paul S. Appelbaum - 2010 - American Journal of Bioethics 10 (1):11-13.
  33.  37
    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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  34.  40
    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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  35. 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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  36.  30
    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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  37.  33
    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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  38.  19
    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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  39.  16
    Context is Everything: Psychological Data and Consent to Research.Charles Lidz & Paul S. Appelbaum - 2014 - Hastings Center Report 44 (1):35-36.
    Issues associated with consent to clinical trials have attracted considerable attention recently, spurred in part by controversies over alleged inadequacies in the consent process. Professor Jansen's interesting essay is unusual in two ways. First, it raises issues about the conceptualization of one set of problems in informed consent (which Jansen subsumes under the term “therapeutic error”) and, more critically, about the methods and the data used to assess them. Second, she is unique in using the findings of academic experimental psychology (...)
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  40.  25
    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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  41.  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.
    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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  42.  59
    Avoiding Premature Judgments About the Duty to Protect.Paul S. Appelbaum - 2011 - Ethics and Behavior 21 (1):82-83.
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  43.  14
    17 Coercion and undue influence in decisions to participate in psychiatric research.Paul S. Appelbaum, Charles W. Lidz & Robert Klitzman - 2011 - In Thomas W. Kallert, Juan E. Mezzich & John Monahan (eds.), Coercive treatment in psychiatry: clinical, legal and ethical aspects. Hoboken, NJ: Wiley-Blackwell. pp. 293.
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  44.  61
    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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  45.  11
    Comment on the Case of Mr. A.B.Paul S. Appelbaum - 2007 - Journal of Clinical Ethics 18 (4):402-403.
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  46.  22
    Drugging a Defendant: Arm‐Chair Ethics?Paul S. Appelbaum, Thomas G. Gutheil & Michael J. Keyes - 1979 - Hastings Center Report 9 (5):4-4.
  47.  9
    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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  48.  12
    Is the Need for Treatment Constitutionally Acceptable as a Basis for Civil Commitment?Paul S. Appelbaum - 1984 - Journal of Law, Medicine and Ethics 12 (4):144-149.
  49.  29
    Let Therapists Be Therapists, Not Police.Paul S. Appelbaum - 2013 - American Journal of Bioethics 13 (10):71 - 72.
  50.  27
    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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