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  1. added 2020-05-15
    Interculturalism and Informed Consent: Respecting Cultural Differences Without Breaching Human Rights.Perihan Elif Ekmekci & Berna Arda - 2017 - Cultura 14 (2):159-172.
    Interventions in medicine require multicenter clinical trialson a large rather than limited number of subjects from various genetic and cultural backgrounds. International guidelines to protect the rights and well-being of human subjects involved in clinical trialsarecriticizedforthe priority they place on Western cultural values. These discussions become manifest especially with regard to the content and methodology of the informed consent procedure. The ethical dilemma emerges from the argument that there are fundamental differences about the concept of respect for the autonomy of (...)
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  2. added 2020-05-07
    Public Interest in Health Data Research: Laying Out the Conceptual Groundwork.Angela Ballantyne & G. Owen Schaefer - forthcoming - Journal of Medical Ethics:medethics-2020-106152.
    The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...)
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  3. added 2020-04-27
    How Should Physicians Manage Neuroprognosis with ECPR?Ian McCurry, Jason Han & Andrew Courtwright - forthcoming - Narrative Inquiry in Bioethics.
    Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized (...)
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  4. added 2020-04-27
    Refusing Medical Treatment.L. M. Peterson - 1988 - Perspectives in Biology and Medicine 31 (3):454.
  5. added 2020-04-26
    On the Do Not Resuscitate Policy.H. Muslin & S. Schade - 1987 - Perspectives in Biology and Medicine 31 (2):285-290.
  6. added 2020-04-22
    New Medical Technologies and the Ethical Challenges for Minors From the Perspective of Human Dignity.David Kirchhoffer & Kris Dierickx - 2011 - In Jan C. Joerden, Eric Hilgendorf, Natalia Petrillo & Felix Thiele (eds.), Menschenwürde und moderne Medizintechnik. Baden Baden:
    Summary This volume undertakes to determine the fundamentals and limits of an ethical assessment of the methods of modern medical technology with regard to the concepts of human dignity and human image, which are particularly important for this purpose. It shows that the philosophical-legal foundation of the term human dignity has not yet been clearly clarified; one even has to ask whether the term is (still) suitable for assessing ethical problems in medical technology. The term human image also needs clarification (...)
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  7. added 2020-04-16
    Beneficence in Research Ethics.David G. Kirchhoffer, C. Favor & C. Cordner - 2019 - In D. Kirchhoffer & B. Richards (eds.), Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law. Cambridge:
    This chapter examines the explicit and implicit roles that the concept of beneficence plays in the guidelines that govern biomedical research involving humans. We suggest that the role beneficence is actually playing in the guidelines is more comprehensive than is commonly assumed. The broader conceptualisation of beneficence proposed here clarifies the relationship of beneficence to respect for autonomy. It does this by showing how respect for autonomy is at the service of beneficence rather than in tension with it.
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  8. added 2020-04-16
    Introduction: The Limits of Respect for Autonomy.David G. Kirchhoffer - 2019 - In D. Kirchhoffer & B. Richards (eds.), Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law. Cambridge:
    This book makes an important contribution to ongoing efforts in the fields of medical law and bioethics to answer the challenges posed by the limitations of the principle of respect for autonomy, especially as these pertain to human research ethics. The principle of respect for autonomy seems to have become firmly embedded in human research ethics since its inclusion in the 1947 Nuremberg Code, which was a response to atrocities committed by Nazi doctors. Nonetheless, there is an increasing awareness of (...)
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  9. added 2020-04-16
    Clarifying the Best Interests Standard: The Elaborative and Enumerative Strategies in Public Policy-Making.Chong Ming Lim, Michael C. Dunn & Jacqueline J. Chin - 2016 - Journal of Medical Ethics 42 (8):542-549.
    One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce the indeterminacy surrounding medical decisions. (...)
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  10. added 2020-04-15
    Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law.David Kirchhoffer & Bernadette J. Richards (eds.) - 2019 - Cambridge: Cambridge University Press.
    Respect for autonomy has become a fundamental principle in human research ethics. Nonetheless, this principle and the associated process of obtaining informed consent do have limitations. This can lead to some groups, many of them vulnerable, being left understudied. This book considers these limitations and contributes through legal and philosophical analyses to the search for viable approaches to human research ethics. It explores the limitations of respect for autonomy and informed consent both in law and through the examination of cases (...)
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  11. added 2020-04-15
    Introduction: The Limits of Respect for Autonomy.David Kirchhoffer - 2019 - In David G. Kirchhoffer & Bernadette J. Richards (eds.), Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law. Cambridge: pp. 1-14.
    This book makes an important contribution to ongoing efforts in the fields of medical law and bioethics to answer the challenges posed by the limitations of the principle of respect for autonomy, especially as these pertain to human research ethics. The principle of respect for autonomy seems to have become firmly embedded in human research ethics since its inclusion in the 1947 Nuremberg Code, which was a response to atrocities committed by Nazi doctors. Nonetheless, there is an increasing awareness of (...)
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  12. added 2020-04-15
    Dignity, Being and Becoming in Research Ethics.David G. Kirchhoffer - 2019 - In D. Kirchhoffer & B. Richards (eds.), Beyond Autonomy: Limits and Alternatives to Informed Consent in Research Ethics and Law. Cambridge:
    Since the end of World War II, most guidelines governing human research seem to have relied on the principle of respect for autonomy as a key, though not sole, criterion in assessing the moral validity of research involving human participants.1 One explanation for this apparent reliance on respect for autonomy may be that respect for autonomy, made effective through the practice of obtaining informed consent, functions as a useful proxy when dealing with competent adults for the more complex principle of (...)
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  13. added 2020-04-13
    Harm, Truth, and the Nocebo Effect.Dien Ho - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (2):236-245.
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  14. added 2020-04-01
    Clarifying How to Deploy the Public Interest Criterion in Consent Waivers for Health Data and Tissue Research.G. Owen Schaefer, Graeme Laurie, Sumytra Menon, Alastair V. Campbell & Teck Chuan Voo - 2020 - BMC Medical Ethics 21 (1):1-10.
    BackgroundSeveral jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion.Main textThis paper clarifies how the public interest criterion can be defensibly deployed. We first explain the ethical basis for (...)
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  15. added 2020-03-10
    Decision-Making Competence and Respect for Patient Autonomy.Jukka Varelius - 2011 - Res Cogitans 8 (1).
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  16. added 2020-02-11
    A History and Theory of Informed Consent.William G. Bartholome - 1988 - Ethics 98 (3):605-606.
  17. added 2020-02-06
    Informed Consent and Collaborative Research: Perspectives From the Developing World.Adnan A. Hyder & Salman A. Wali - 2006 - Developing World Bioethics 6 (1):33–40.
    203 surveys were considered complete and were included in the analysis. Written consent was not used by nearly 40% of the researchers.
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  18. added 2020-01-29
    The Doctor, the Patient, and the System: Reflections on Education for Clinical Careers.Jeremiah A. Barondess - 1983 - Perspectives in Biology and Medicine 26 (2):261-273.
  19. added 2020-01-29
    Some Ethical Issues in Research Involving Human Subjects.LeRoy Walters, Carlos A. Schaffenburg & Samuel Stearns - 1977 - Perspectives in Biology and Medicine 20 (2):193-214.
  20. added 2020-01-20
    Medical Experimentation on Prisoners.Carl Cohen - 1978 - Perspectives in Biology and Medicine 21 (3):357-372.
  21. added 2020-01-20
    Informed Consent and the Old-Fashioned Conscience of the Physician-Investigator.Paul Heller - 1977 - Perspectives in Biology and Medicine 20 (3):434-438.
  22. added 2020-01-04
    Etică și integritate academică.Emanuel Socaciu, Constantin Vica, Emilian Mihailov, Toni Gibea, Valentin Muresan & Mihaela Constantinescu - 2018 - Bucharest: Editura Universității din București.
  23. added 2019-12-16
    The Narrative Coherence Standard and Child Patients' Capacity to Consent.Gah-Kai Leung - 2020 - American Journal of Bioethics Neuroscience 11 (1):40-42.
    Aryeh Goldberg compellingly argues for a Narrative Coherence Standard (NCS) to bolster existing methods of assessing patients' mental capacity. But his account fails to distinguish between the cognitive abilities of children and adults; consequently, worries may be raised about the scope of the NCS, in particular when we consider child patients. In this article, I argue the NCS cannot plausibly apply to children. Since children's self-conception does not arrive fully formed — but rather is a product of both incomplete cognitive (...)
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  24. added 2019-12-06
    Paternalismus, Zwang Und Manipulation in der Psychatrie.Thomas Schramme - 2013 - In Johann Ach (ed.), Grenzen der Selbstbestimmung in der Medizin. Mentis. pp. 263-281.
  25. added 2019-12-06
    Clinical Trials of Xenotransplantation: Waiver of the Right to Withdraw From a Clinical Trial Should Be Required.Monique A. Spillman & Robert M. Sade - 2007 - Journal of Law, Medicine and Ethics 35 (2):265-272.
  26. added 2019-12-05
    Epistemic Burdens, Moral Intimacy, and Surrogate Decision Making.Parker Crutchfield & Scott Scheall - 2020 - American Journal of Bioethics 20 (2):59-61.
    Berger (forthcoming) states that moral intimacy is important in applying the best interests standard. But what he calls moral intimacy requires that someone has overcome epistemic burdens needed to represent the patient. We argue elsewhere that good surrogate decision-making is first and foremost a matter of overcoming epistemic burdens, or those obstacles that stand in the way of a surrogate decision-maker knowing what a patient wants and how to satisfy those preferences. Berger’s notion of moral intimacy depends on epistemic intimacy: (...)
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  27. added 2019-12-03
    Medical Privacy and Big Data: A Further Reason in Favour of Public Universal Healthcare Coverage.Carissa Véliz - 2019 - In T. C. de Campos, J. Herring & A. M. Phillips (eds.), Philosophical Foundations of Medical Law. Oxford, U.K.: Oxford University Press. pp. 306-318.
    Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At best, data about your health might (...)
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  28. added 2019-12-02
    "Ethics and Clinical Research" in Biographical Perspective.Susan E. Lederer - 2016 - Perspectives in Biology and Medicine 59 (1):18-36.
    Fifty years ago, Henry Knowles Beecher published his essay on clinical research ethics in the New England Journal of Medicine. The culmination of more than a decade and a half’s rumination and reflection on the use of patients and “captive populations” in research, Beecher’s 1966 article understandably casts a large shadow in American bioethics. In 1976, the Institute of Society, Ethics and the Life Sciences established the Henry Knowles Beecher Award for Contributions to Ethics and the Life Sciences and named (...)
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  29. added 2019-12-02
    Clinical Trials Without Consent?Scott Y. H. Kim - 2016 - Perspectives in Biology and Medicine 59 (1):132-146.
    The routine practice of clinical research involving patient-subjects without informed consent prior to 1966 unquestionably was unethical. Does it follow that all clinical research involving competent adult patient-subjects is unethical without informed consent?In his landmark 1966 paper, Henry Beecher noted that of the 50 example studies he had originally compiled in preparation for that paper, only two even mentioned consent, and he observed further that mention of consent is “meaningless unless one knows how fully the patient was informed”. Some of (...)
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  30. added 2019-12-02
    Emerging Science, Emerging Democracy: Stem Cell Research and Policy in Taiwan.Jennifer A. Liu - 2016 - Perspectives on Science 24 (5):609-636.
    “You are interested in ethics,” the clinician said, “there are problems with medical ethics in Taiwan.” It was 2005, shortly after I had moved to Taiwan. A little later, a professor told me of a university hospital that served as a site for a transnational clinical trial run by a pharmaceutical company. He said that since no informed consent procedure was in place at that time, the hospital had simply obtained employer consent. “That’s why companies want to come to Taiwan (...)
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  31. added 2019-11-10
    Consent and the Criminal Law.Lucinda Vandervort - 1990 - Osgoode Hall Law Journal 28 (2):485-500.
    The author examines two proposals to expand legal recognition of individual control over physical integrity. Protections for individual autonomy are discussed in relation to the right to die, euthanasia, medical treatment, and consensual and assaultive sexual behaviours. The author argues that at present, the legal doctrine of consent protects only those individual preferences which are seen to be congruent with dominant societal values; social preferences and convenience override all other individual choices. Under these conditions, more freedom to waive rights of (...)
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  32. added 2019-11-08
    Does Decision-Making Capacity Require the Absence of Pathological Values?Demian Whiting - 2009 - Philosophy, Psychiatry, and Psychology 16 (4):341-344.
    Decision-making capacity (DMC) is normally taken to include (1) understanding (and appreciation); (2) the ability to deliberate or weigh up; and (3) the ability to express a choice. In an article published recently in PPP, Jacinta Tan and her colleagues (2006) suggest that DMC requires also (4) the absence of 'pathological values' (i.e., values that arise from mental disorder). In this paper, I argue that although (1)–(3) might be necessary for DMC, (4) is not necessary (barring cases where pathological values (...)
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  33. added 2019-10-28
    Consent’s Dominion: Dementia and Prior Consent to Sexual Relations.Samuel Director - 2019 - Bioethics 33 (9):1065-1071.
    In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long-term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue there is compelling reason to endorse (...)
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  34. added 2019-10-26
    Reasonable Parental and Medical Obligations in Pediatric Extraordinary Therapy.Michal Pruski & Nathan K. Gamble - 2019 - The Linacre Quarterly 86 (2-3):198-206.
    The English cases of Charlie Gard and Alfie Evans involved a conflict between the desires of their parents to preserve their children’s lives and judgments of their medical teams in pursuit of clinically appropriate therapy. The treatment the children required was clearly extraordinary, including a wide array of advanced life-sustaining technological support. The cases exemplify a clash of worldviews rooted in different philosophies of life and medical care. The article highlights the differing perspectives on parental authority in medical care in (...)
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  35. added 2019-10-21
    Should Aggregate Patient Preference Data Be Used to Make Decisions on Behalf of Unrepresented Patients?Nathaniel Sharadin - 2019 - AMA Journal of Ethics 21 (7):566-574.
    Patient preference predictors aim to solve the moral problem of making treatment decisions on behalf of incapacitated patients. This commentary on a case of an unrepresented patient at the end of life considers 3 related problems of such predictors: the problem of restricting the scope of inputs to the models (the “scope” problem), the problem of weighing inputs against one another (the “weight” problem), and the problem of multiple reasonable solutions to the scope and weight problems (the “multiple reasonable models” (...)
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  36. added 2019-10-18
    Shared Decision‐Making in Maternity Care: Acknowledging and Overcoming Epistemic Defeaters.Keith Begley, Deirdre Daly, Sunita Panda & Cecily Begley - 2019 - Journal of Evaluation in Clinical Practice 25 (6):1113-1120.
    Shared decision‐making involves health professionals and patients/clients working together to achieve true person‐centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision‐making is, discuss its necessary conditions, and develop a definition that can be used in practice to support excellence in maternity care. Discussion (...)
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  37. added 2019-09-26
    Hormone Replacement Therapy: Informed Consent Without Assessment?Toni C. Saad, Bruce Philip Blackshaw & Daniel Rodger - 2019 - Journal of Medical Ethics 45 (12):1-2.
    Florence Ashley has argued that requiring patients with gender dysphoria to undergo an assessment and referral from a mental health professional before undergoing hormone replacement therapy is unethical and may represent an unconscious hostility towards transgender people. We respond, first, by showing that Ashley has conflated the self-reporting of symptoms with self-diagnosis, and that this is not consistent with the standard model of informed consent to medical treatment. Second, we note that the model of informed consent involved in cosmetic surgery (...)
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  38. added 2019-09-12
    Measuring Understanding and Respecting Trust in Biobank Consent.T. J. Kasperbauer & Peter H. Schwartz - 2019 - American Journal of Bioethics 19 (5):29-31.
    Volume 19, Issue 5, May 2019, Page 29-31.
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  39. added 2019-09-12
    Communicating Identifiability Risks to Biobank Donors.T. J. Kasperbauer, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (1):123-136.
  40. added 2019-09-09
    Capacity for Preferences and Pediatric Assent: Implications for Pediatric Practice.Mark Christopher Navin & Jason Adam Wasserman - 2019 - Hastings Center Report 49 (1):43-51.
  41. added 2019-09-09
    Reasons to Amplify the Role of Parental Permission in Pediatric Treatment.Mark Christopher Navin & Jason Adam Wasserman - 2017 - American Journal of Bioethics 17 (11):6-14.
    Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...)
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  42. added 2019-09-01
    Public Knowledge and Attitudes Towards Consent Policies for Organ Donation in Europe. A Systematic Review.Alberto Molina Pérez, David Rodríguez-Arias, Janet Delgado-Rodríguez, Myfanwy Morgan, Mihaela Frunza, Gurch Randhawa, Jeantine Reiger-Van de Wijdeven, Eline Schiks, Sabine Wöhlke & Silke Schicktanz - 2019 - Transplantation Reviews 33 (1):1-8.
    Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection, data extraction, and quality assessment were conducted by (...)
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  43. added 2019-09-01
    The Role of the Family in Deceased Organ Procurement: A Guide for Clinitians and Policymakers.Janet Delgado, Alberto Molina Pérez, David Rodríguez-Arias & David M. Shaw - 2019 - Transplantation 103 (5):e112-e118.
    Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals about a person’s donation wishes. Second, families (...)
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  44. added 2019-08-26
    Using Animal-Derived Constituents in Anaesthesia and Surgery: The Case for Disclosing to Patients.Daniel Rodger & Bruce P. Blackshaw - 2019 - BMC Medical Ethics 20 (1):1-9.
    Animal-derived constituents are frequently used in anaesthesia and surgery, and patients are seldom informed of this. This is problematic for a growing minority of patients who may have religious or secular concerns about their use in their care. It is not currently common practice to inform patients about the use of animal-derived constituents, yet what little empirical data does exist indicates that many patients want the opportunity to give their informed consent. First, we review the nature and scale of the (...)
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  45. added 2019-08-26
    When Scientists Deceive: Applying the Federal Regulations.Collin C. O'Neil & Franklin G. Miller - 2009 - Journal of Law, Medicine and Ethics 37 (2):344-350.
    Deception is a useful methodological device for studying attitudes and behavior, but deceptive studies fail to fulfill the informed consent requirements in the U.S. federal regulations. This means that before they can be approved by Institutional Review Boards, they must satisfy the four regulatory conditions for a waiver or alteration of these requirements. To illustrate our interpretation, we apply the conditions to a recent study that used deception to show that subjects judged the same wine as more enjoyable when they (...)
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  46. added 2019-08-21
    Methodological and Inducement Manipulation.Collin O’Neil - 2013 - American Journal of Bioethics 13 (11):55-57.
  47. added 2019-08-20
    A Mixed Judgment Standard of Surrogate Decision Making.Nathan Stout - forthcoming - Journal of Medicine and Philosophy.
    The Substituted Judgment Standard (SJS) for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this paper, I offer an (...)
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  48. added 2019-06-29
    Consent in Clinical Research.Collin O'Neil - 2018 - In Andreas Müller & Peter Schaber (eds.), The Routledge Handbook of the Ethics of Consent. New York, USA: Routledge. pp. 297-310.
    This article addresses two areas of continuing controversy about consent in clinical research: the question of when consent to low risk research is necessary, and the question of when consent to research is valid. The article identifies a number of considerations relevant to determining whether consent is necessary, chief of which is whether the study would involve subjects in ways that would (otherwise) infringe their rights. When consent is necessary, there is a further question of under what conditions consent is (...)
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  49. added 2019-06-24
    Can Children and Young People Consent to Be Tested for Adult Onset Genetic Disorders.Donna Dickenson - 1999 - British Medical Journal 318:1063-1066.
    What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms (...)
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  50. added 2019-06-24
    Consent in Children.Donna Dickenson - 1998 - Current Opinion in Psychiatry 11:389-393.
    Children and young people under 18 years old should no longer be regarded as incompetent to give or withhold consent in decisions involving their health care, Recent research suggests a functional test of cognitive and emotional maturity, rather than a strict age cut-off point. However, it is often difficult to implement these recommendations in practice, not least because the law is, if anything, increasingly 'hard-line' about children's autonomy.
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