Results for 'research exceptions'

992 found
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  1.  35
    Exceptions to the rule of informed consent for research with an intervention.Susanne Rebers, Neil K. Aaronson, Flora E. van Leeuwen & Marjanka K. Schmidt - 2016 - BMC Medical Ethics 17 (1):1-11.
    BackgroundIn specific situations it may be necessary to make an exception to the general rule of informed consent for scientific research with an intervention. Earlier reviews only described subsets of arguments for exceptions to waive consent.MethodsHere, we provide a more extensive literature review of possible exceptions to the rule of informed consent and the accompanying arguments based on literature from 1997 onwards, using both Pubmed and PsycINFO in our search strategy.ResultsWe identified three main categories of arguments for (...)
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  2.  69
    Research without consent: Exception from and waiver of informed consent in resuscitation research.Michelle H. Biros - 2007 - Science and Engineering Ethics 13 (3):361-369.
    The ethical concept of Informed Consent provides individuals with the right and the opportunity to approve of events that will occur regarding his or her own person. In medicine, informed consent is obtained for treatment and for research participation. However, under some circumstances, prospective informed consent cannot be obtained because of the devastating clinical condition of the patient. In emergency circumstances, treatment is never withheld if obtaining informed consent from a critically ill person is not possible or if a (...)
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  3.  8
    Research Ethics in Exceptional Times: What Lessons Should We Learn from Covid19?Søren Holm - 2022 - In Tomas Zima & David N. Weisstub (eds.), Medical Research Ethics: Challenges in the 21st Century. Springer Verlag. pp. 355-366.
    The Covid-19 pandemic has led to an unprecedented acceleration of research. Thousands of papers have been published in a very short time across a wide range of academic disciplines. This has already led to instances of research misconduct and articles have been withdrawn from prominent journals very soon after being published. It has also led to calls for the relaxation of generally accepted research ethics rules and rules concerning the protection of personal data during what is claimed (...)
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  4.  19
    Exception from Informed Consent for Emergency Research: Drawing on Existing Skills and Experience.Arlene M. Davis - 1998 - IRB: Ethics & Human Research 20 (5):1.
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  5.  12
    An Exception To The Rule: Journalism And Research Ethics.D. Matheson - 2018 - In Ron Iphofen & Martin Tolich (eds.), The Sage Handbook of Qualitative Research Ethics. Los Angeles: Sage.
    This chapter argues that journalism’s ethical frameworks, particularly at moments when it is making its grandest claims to value, collide with those prevalent within universities and particularly with ethical review structures. Working through these tensions requires some accommodation from all sides, and also provides opportunities for learning. The chapter discusses how universities might recognize the ethics systems particular to practices, like journalism, which set out to serve the public good and which produce knowledge in ways distinctive to that practice. Underneath (...)
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  6.  66
    Social research in sport (and beyond): Notes on exceptions to informed consent.Scott Fleming - 2013 - Research Ethics 9 (1):32-43.
    Over the last two decades sport-related research has become increasingly influenced by ethical propriety and institutional governance. Whilst there has been thorough consideration of biomedical and associated research in sport and exercise, social research in sport studies has received less attention. In this article, following a brief contextualization of the current climate for research ethics discourse, the planks of an argument for social research in sport without informed consent are addressed. Dealing with ideas linked to (...)
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  7.  22
    Risk in Emergency Research Using a Waiver of/Exception from Consent: Implications of a Structured Approach for Institutional Review Board Review.Andrew D. McRae, Stacy Ackroyd-Stolarz & Charles Weijer - unknown
    OBJECTIVE: To apply component analysis, a structured approach to the ethical analysis of risks and potential benefits in research, to published emergency research using a waiver of/exception from informed consent. The hypothesis was that component analysis could be used with a high degree of interrater reliability, and that the vast majority of emergency research would comply with a minimal-risk threshold. METHODS: A Medline search and manual search were done to identify studies using a waiver of/exception from informed (...)
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  8.  28
    Emergency research and consent: Keeping the exception from undermining the rule.Arthur R. Derse - 2006 - American Journal of Bioethics 6 (3):36 – 37.
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  9.  14
    Precision Medicine Research: An Exception or An Exemplar?Emily A. Largent - 2019 - Journal of Law, Medicine and Ethics 47 (1):149-151.
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  10.  29
    Measuring the Unmeasurable by Ticking Boxes and Opening Pandora's Box? Mixed Methods Research as a Useful Tool for Investigating Exceptional and Spiritual Experiences.Niko Kohls, Anna Hack & Harald Walach - 2008 - Archive for the Psychology of Religion / Archiv für Religionspychologie 30 (1):155-187.
    A monomethod bias still prevails in the psychology of religion, with the developing field studying the relationship between religiosity, spirituality and health being almost completely dominated by questionnaire research. This comes as a surprise, because the experiential side of religion, spirituality, can by definition be regarded as inner and private experiences of transcendence that have frequently been described as being of utmost importance. At first glance, from this perspective, standardized questionnaire scales appear to be inappropriate for “measuring the unmeasurable”. (...)
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  11.  28
    Not All Human Subjects Research Is Exceptional.Barton Moffatt - 2010 - American Journal of Bioethics 10 (8):62-63.
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  12.  6
    Military medical research: 1. Are there ethical exceptions?C. Levine - 1988 - IRB: Ethics & Human Research 11 (4):5-7.
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  13.  30
    A qualitative study of institutional review board members' experience reviewing research proposals using emergency exception from informed consent.K. B. McClure, N. M. Delorio, T. A. Schmidt, G. Chiodo & P. Gorman - 2007 - Journal of Medical Ethics 33 (5):289-293.
    Background: Emergency exception to informed consent regulation was introduced to provide a venue to perform research on subjects in emergency situations before obtaining informed consent. For a study to proceed, institutional review boards need to determine if the regulations have been met.Aim: To determine IRB members’ experience reviewing research protocols using emergency exception to informed consent.Methods: This qualitative research used semistructured telephone interviews of 10 selected IRB members from around the US in the fall of 2003. IRB (...)
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  14.  35
    Measuring the Unmeasurable by Ticking Boxes and Opening Pandora's Box? Mixed Methods Research as a Useful Tool for Investigating Exceptional and Spiritual Experiences.Niko Kohls, Anna Hack & Harald Walach - 2008 - Archive for the Psychology of Religion 30 (1):155-187.
    A monomethod bias still prevails in the psychology of religion, with the developing field studying the relationship between religiosity, spirituality and health being almost completely dominated by questionnaire research. This comes as a surprise, because the experiential side of religion, spirituality, can by definition be regarded as inner and private experiences of transcendence that have frequently been described as being of utmost importance. At first glance, from this perspective, standardized questionnaire scales appear to be inappropriate for “measuring the unmeasurable”. (...)
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  15.  17
    Exception From Informed Consent: How IRB Reviewers Assess Community Consultation and Public Disclosure.Makini Chisolm-Straker, Denise Nassisi, Mohamud R. Daya, Jennifer N. B. Cook, Ilene F. Wilets, Cindy Clesca & Lynne D. Richardson - 2021 - AJOB Empirical Bioethics 12 (1):24-32.
    Exception from Informed Consent (EFIC) regulations detail specific circumstances in which Institutional Review Boards (IRB) can approve studies where obtaining informed consent is not possible prior to subject enrollment.To better understand how IRB members evaluate community consultation (CC) and public disclosure (PD) processes and results, semi-structured interviews of EFIC-experienced IRB members were conducted and analyzed using thematic analysis.Interviews with 11 IRB members revealed similar approaches to reviewing EFIC studies. Most use summaries of CC activities to determine community members’ attitudes; none (...)
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  16.  25
    Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights are There, and Who Should Decide about Exceptions?Gert Helgesson - 2014 - Journal of Law, Medicine and Ethics 42 (1):28-37.
    Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents did not want to be informed (...)
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  17.  45
    Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights Are There, and Who Should Decide about Exceptions?Gert Helgesson - 2014 - Journal of Law, Medicine and Ethics 42 (1):28-37.
    This paper defends the right not to know personal health information, while it discards the right of research participants to receive individual research results. Disagreement regarding the right not to know stems from two different conceptions of autonomy, leading to opposing normative conclusions. Researchers occasionally have good reason to inform research participants about incidental findings in spite of the absence of a right to know such information. Such decisions have to be made by health care personnel and (...)
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  18. Scientific research is a moral duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.
    Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in itScience is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and (...)
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  19.  27
    Uninformed refusals: objections to enrolment in clinical trials conducted under an Exception from Informed Consent for emergency research.Victoria Vorholt & Neal W. Dickert - 2019 - Journal of Medical Ethics 45 (1):18-21.
    Clinical trials in emergency situations present unique challenges, because they involve enrolling individuals who lack capacity to consent in the context of acute illness or injury. The US Department of Health and Human Services and Food and Drug Administration regulations allowing an Exception from Informed Consent in these circumstances contain requirements for community consultation, public disclosure and restrictions on study risks and benefits. In this paper, we analyse an issue raised in the regulations that has received little attention or analysis (...)
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  20. No Exception for Belief.Susanna Rinard - 2017 - Philosophy and Phenomenological Research 94 (1):121-143.
    This paper defends a principle I call Equal Treatment, according to which the rationality of a belief is determined in precisely the same way as the rationality of any other state. For example, if wearing a raincoat is rational just in case doing so maximizes expected value, then believing some proposition P is rational just in case doing so maximizes expected value. This contrasts with the popular view that the rationality of belief is determined by evidential support. It also contrasts (...)
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  21.  10
    Empowering the Research Community to Investigate Misconduct and Promote Research Integrity and Ethics: New Regulation in Scandinavia.Knut Jørgen Vie - 2022 - Science and Engineering Ethics 28 (6):1-19.
    Researchers sometimes engage in various forms of dishonesty and unethical behavior, which has led to regulatory efforts to ensure that they work according to acceptable standards. Such regulation is a difficult task, as research is a diverse and dynamic endeavor. Researchers can disagree about what counts as good and acceptable standards, and these standards are constantly developing. This paper presents and discusses recent changes in research integrity and ethics regulation in Norway, Denmark, and Sweden. Recognizing that research (...)
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  22.  30
    What treatments are "satisfactory?" Divining regulatory intent and an ethical basis for exception to informed consent for emergency research.Robert Silbergleit, Drew Watters & Michael R. Sayre - 2006 - American Journal of Bioethics 6 (3):24 – 26.
  23.  13
    Why Exceptional Public Investment in the Development of Vaccines Is Justified for COVID-19, But Not for Other Unmet Medical Needs.Eline M. Bunnik & Jilles Smids - 2021 - American Journal of Bioethics 21 (12):22-25.
    In response to the COVID-19 pandemic, states have funneled exceptional amounts of public funding into research and development of diagnostics, treatments and vaccines to help fight the virus. In th...
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  24.  15
    Personal Data Protection as an Element of the Ethical Evaluation of Scientific Research Involving Humans.Mariusz Jagielski - 2023 - Diametros 19 (76):1-14.
    The aim of the article is to explain the relationship between the ethical evaluation of scientific research involving personal data and the assessment of compliance with data protection law. The article presents the mutual relationship between the protection of personal data and scientific activity from a dogmatic perspective, the legal regulation of the processing of personal data in scientific research, and the so-called research exceptions that apply when data are processed for scientific research. It also (...)
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  25.  4
    Introduction: Research Ethics and Health Policy in Epidemics and Pandemics.Michael Parker, Susan Bull & Katharine Wright - 2023 - In Susan Bull, Michael Parker, Joseph Ali, Monique Jonas, Vasantha Muthuswamy, Carla Saenz, Maxwell J. Smith, Teck Chuan Voo, Katharine Wright & Jantina de Vries (eds.), Research Ethics in Epidemics and Pandemics: A Casebook. Springer Verlag. pp. 1-22.
    Global health emergencies such as the COVID-19 pandemic are contexts in which it is critical to draw upon learning from prior research and to conduct novel research to inform real-time decision-making and pandemic responses. While research is vitally important, however, emergencies are radically non-ideal contexts for its conduct, due to exceptional uncertainty, urgency, disruption, health needs, and strain on existing health systems, amongst other challenges. This generates novel ethical challenges and a broader conception of research ethics (...)
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  26.  28
    Is mandatory research ethics reviewing ethical?Murray Dyck & Gary Allen - 2013 - Journal of Medical Ethics 39 (8):517-520.
    Review boards responsible for vetting the ethical conduct of research have been criticised for their costliness, unreliability and inappropriate standards when evaluating some non-medical research, but the basic value of mandatory ethical review has not been questioned. When the standards that review boards use to evaluate research proposals are applied to review board practices, it is clear that review boards do not respect researchers or each other, lack merit and integrity, are not just and are not beneficent. (...)
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  27. Clinical equipoise and the incoherence of research ethics.Franklin G. Miller & Howard Brody - 2007 - Journal of Medicine and Philosophy 32 (2):151 – 165.
    The doctrine of clinical equipoise is appealing because it appears to permit physicians to maintain their therapeutic obligation to offer optimal medical care to patients while conducting randomized controlled trials (RCTs). The appearance, however, is deceptive. In this article we argue that clinical equipoise is defective and incoherent in multiple ways. First, it conflates the sound methodological principle that RCTs should begin with an honest null hypothesis with the questionable ethical norm that participants in these trials should never be randomized (...)
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  28.  25
    Reasons for Not Participating in PCTs: The Comparative Case of Emergency Research under an Exception from Informed Consent (EFIC).Ethan Cowan, Mark Sheehan & Katherine Sahan - 2023 - American Journal of Bioethics 23 (8):70-72.
    We read with great interest Garland, Morain and Sugarman’s manuscript on the obligations of clinicians to participate in pragmatic clinical trials (PCTs) (Garland, Morain and Sugarman 2023). We bel...
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  29.  9
    Loosen Informed Consent Requirement in Research Context: The Notions of Exception of Informed Consent and Default Options.Chan Chan-ip - 2009 - Asian Bioethics Review 1 (2):158-164.
  30.  70
    The morality of weapons research.John Forge - 2004 - Science and Engineering Ethics 10 (3):531-542.
    I ask whether weapons research is ever justified. Weapons research is identified as the business of the engineer. It is argued that the engineer has responsibility for the uses to which the tools that he designs can be put, and that responsibility extends to the use of weapons. It is maintained that there are no inherently defensive weapons, and hence there is no such thing as ‘defensive’ weapons research. The issue then is what responsibilities as a professional (...)
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  31.  19
    The Characteristics of Exceptional Human Experiences.A. D. Sagher, B. Butzer & H. Wahbeh - 2019 - Journal of Consciousness Studies 26 (11-12):203-237.
    Exceptional human experiences (EHEs) have garnered increasing research attention, particularly with regard to the characteristics and potential functional aspects of these experiences. The current study sought to replicate and expand upon previous research on EHEs by using a mixed-methods approach to examine the characteristics of EHEs in a large adult sample. The participants were 869 healthy adults who completed a survey that allowed participants to share both quantitative ratings and qualitative descriptions of EHEs. The results revealed that 96.7% (...)
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  32.  21
    Exceptions to the Rule: Upwardly Mobile White and Mexican American High School Girls.Julie Bettie - 2002 - Gender and Society 16 (3):403-422.
    While most high school students will obtain future social class positions consistent with their class backgrounds, a handful of students are exceptions to this rule, being either upwardly mobile working-class students or downwardly mobile middle-class students. Highlighting predominant patterns, research typically ignores such students precisely because they are exceptions to the rule. This article, based on ethnographic research among white and Mexican American high school girls in California's Central Valley, foregrounds the experience of upwardly mobile working-class (...)
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  33.  6
    From exceptional to common presence: Italian women in twentieth-century life sciences.Ariane Dröscher - 2022 - History and Philosophy of the Life Sciences 44 (4):1-21.
    This essay surveys the situation of Italian women life scientists from the late nineteenth to the mid-twentieth century. It follows the path that took women from being an exceptional presence to becoming a common, yet not equal, presence in the Italian science departments. Very different proportions of women occupied the three ranks in the academic hierarchy—students, research staff and professors. From the late nineteenth century onwards, women started to enrol in Italian universities. Initially, the second most popular department among (...)
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  34.  21
    Misuse of “Usual Care” in Emergency Care Research: A Call for Adapting Rules Governing Exception from Informed Consent (EFIC) Studies.Ethan Cowan, Kate Sahan & Mark Sheehan - 2020 - American Journal of Bioethics 20 (1):59-61.
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  35. Research integrity codes of conduct in Europe: Understanding the divergences.Hugh Desmond & Kris Dierickx - 2021 - Bioethics 35 (5):414-428.
    In the past decade, policy-makers in science have been concerned with harmonizing research integrity standards across Europe. These standards are encapsulated in the European Code of Conduct for Research Integrity. Yet, almost every European country today has its own national-level code of conduct for research integrity. In this study we document in detail how national-level codes diverge on almost all aspects concerning research integrity – except for what constitutes egregious misconduct. Besides allowing for potentially unfair responses (...)
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  36.  27
    From Ethical Exceptionalism to Ethical Exceptions: The Rule and exception Model and the Changing Meaning of Ethics In German Bioregulation.Kathrin Braun - 2017 - Developing World Bioethics 17 (3):146-156.
    Germany is an interesting case with respect to the governance of reprogenetics. It has a strong profile in the technosciences and high aims regarding the global bioeconomy, yet her regulation of human genetics, reproductive medicine and embryo research has for a long time been rather restrictive. German biopolitical exceptionalism has often been explained by reference to Catholicism and the legacy of the Nazi past. The Germans, so goes the common story, have learnt the lessons of history and translated them (...)
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  37.  17
    Mathematical consensus: a research program.Roy Wagner - 2022 - Axiomathes 32 (3):1185-1204.
    One of the distinguishing features of mathematics is the exceptional level of consensus among mathematicians. However, an analysis of what mathematicians agree on, how they achieve this agreement, and the relevant historical conditions is lacking. This paper is a programmatic intervention providing a preliminary analysis and outlining a research program in this direction.First, I review the process of ‘negotiation’ that yields agreement about the validity of proofs. This process most often does generate consensus, however, it may give rise to (...)
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  38.  78
    Exploitation in payments to research subjects.Trisha Phillips - 2011 - Bioethics 25 (4):209-219.
    Offering cash payments to research subjects is a common recruiting method but there is significant debate about whether and in what amount such payments are appropriate. This paper is concerned with exploitation and whether there should be a lower limit on the amount researchers can pay their subjects. When subjects participate in research as a way to make money, fairness requires that researchers pay them a fair wage. This call for the establishment of a lower limit meets resistance (...)
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  39.  52
    Emergency research without consent under polish law.Joanna Różyńska & Marek Czarkowski - 2007 - Science and Engineering Ethics 13 (3):337-350.
    Although Directive 2001/20/EC of the European Parliament and of Council of 4 April 2001 on the approximation of the laws regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use does not contain an exception for emergency situations, and requires the informed consent of a legal representative in all cases where research is conducted on legally competent individuals who are unable to (...)
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  40.  46
    Solidarity, children and research.Barry Lyons - 2012 - Bioethics 26 (7):369-375.
    While research on children is supported by many professional guidelines, international declarations and domestic legislation, when it is undertaken on children with no possibility of direct benefit it rests on shaky moral foundations. A number of authors have suggested that research enrolment is in the child's best interests, or that they have a moral duty or societal obligation to participate. However, these arguments are unpersuasive. Rather, I will propose in this paper that research participation by children seems (...)
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  41.  10
    On Being Twice Exceptional in Sweden - An Interview-Based Case Study about the Educational Situation for a Gifted Student Diagnosed with ADHD.Anna-Carin Holmgren, Ylva Backman, Viktor Gardelli & Åsa Gyllefjord - 2023 - Education Sciences 13 (11).
    The gifted education research area is rapidly expanding in Sweden. In the context of very limited research nationally, demands are increasing for steering documents and addressing of student and teacher needs in practice. However, Swedish research on students that are ‘twice exceptional’—students classified as being both gifted and disabled (for instance, through a neurodevelopmental disorder such as ADHD)—is nearly non-existent. In this study, we present an exploratory single case study of a female student in school year seven (...)
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  42.  31
    Ethical issues in biomedical research: Perceptions and practices of postdoctoral research fellows responding to a survey.Susan Eastwood, Pamela Derish, Evangeline Leash & Stephen Ordway - 1996 - Science and Engineering Ethics 2 (1):89-114.
    We surveyed 1005 postdoctoral fellows by questionnaire about ethical matters related to biomedical research and publishing; 33% responded. About 18% of respondents said they had taken a course in research ethics, and about 31% said they had had a course that devoted some time to research ethics. A substantial majority stated willingness to grant other investigators, except competitors, access to their data before publication and to share research materials. Respondents’ opinions about contributions justifying authorship of (...) papers were mainly consistent but at variance with those of many biomedical journal editors. More than half said they had observed what they considered unethical research practices. To increase the chances of getting a grant funded, 27% said they were willing to select or omit data to improve their results; to make publication of their work more likely or to benefit their career, 15% would select or omit data and 32% would list an undeserving author. Of respondents who thought they had been unfairly denied authorship on a paper, or been listed with or asked to list an undeserving author, 75% said they would be willing to list an undeserving author (P<0.001). Having taken a course dealing with research ethics had no effect on stated willingness to select or omit data or to fabricate data in the future, but was positively associated with willingness to grant undeserved authorship (P<0.04). Although these results do not controvert research demonstrating the effectiveness of ethics courses during professional education, they indicate that the research environment is a powerful component of a trainee’s experience and ethical development. (shrink)
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  43.  98
    Exceptions to blanket anonymity for the publication of interviews with refugees: African refugees in Israel as a case study.Mollie Gerver - 2013 - Research Ethics 9 (3):121-139.
    Literature on the ethics of researching refugees, both as participants and partners, presents strong arguments for why anonymity is the safer option in the event of questionable consent. However, blanket anonymity, without asking refugee interviewees if they wish to be anonymous, may cause more harm than good in certain contexts. One such context which this article will explore is the context of Israel, where a working Refugee Status Determination (RSD) system has yet to be established. This case study highlights that, (...)
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  44.  28
    Psychical research and the origins of American psychology: Hugo Münsterberg, William James and Eusapia Palladino.Andreas Sommer - 2012 - History of the Human Sciences 25 (2):23-44.
    Largely unacknowledged by historians of the human sciences, late-19th-century psychical researchers were actively involved in the making of fledgling academic psychology. Moreover, with few exceptions historians have failed to discuss the wider implications of the fact that the founder of academic psychology in America, William James, considered himself a psychical researcher and sought to integrate the scientific study of mediumship, telepathy and other controversial topics into the nascent discipline. Analysing the celebrated exposure of the medium Eusapia Palladino by German-born (...)
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  45.  48
    Research traditions and evolutionary explanations in medicine.Pierre-Olivier Méthot - 2011 - Theoretical Medicine and Bioethics 32 (1):75-90.
    In this article, I argue that distinguishing ‘evolutionary’ from ‘Darwinian’ medicine will help us assess the variety of roles that evolutionary explanations can play in a number of medical contexts. Because the boundaries of evolutionary and Darwinian medicine overlap to some extent, however, they are best described as distinct ‘research traditions’ rather than as competing paradigms. But while evolu- tionary medicine does not stand out as a new scientific field of its own, Darwinian medicine is united by a number (...)
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  46.  22
    Health research and systems’ governance are at risk: should the right to data protection override health?C. T. Di Iorio, F. Carinci & J. Oderkirk - 2014 - Journal of Medical Ethics 40 (7):488-492.
    The European Union Data Protection Regulation will have profound implications for public health, health services research and statistics in Europe. The EU Commission's Proposal was a breakthrough in balancing privacy rights and rights to health and healthcare. The European Parliament, however, has proposed extensive amendments. This paper reviews the amendments proposed by the European Parliament Committee on Civil Liberties, Justice and Home Affairs and their implications for health research and statistics. The amendments eliminate most innovations brought by the (...)
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  47.  71
    Exceptions in Nonderivative Value.Garrett Cullity - 2019 - Philosophy and Phenomenological Research 98 (1):26-49.
    According to most substantive axiological theories – theories telling us which things are good and bad – pleasure is nonderivatively good. This seems to imply that it is always good, even when directed towards a bad object, such as another person’s suffering. This implication is accepted by the Mainstream View about misdirected pleasures: it holds that when someone takes pleasure in another person’s suffering, his being pleased is good, although his being pleased by suffering is bad. This view gains some (...)
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  48.  79
    Vulnerable populations in research: The case of the seriously ill.Philip J. Nickel - 2006 - Theoretical Medicine and Bioethics 27 (3):245-264.
    This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces their (...)
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  49.  73
    When and Why Is Research without Consent Permissible?Luke Gelinas, Alan Wertheimer & Franklin G. Miller - 2016 - Hastings Center Report 46 (2):35-43.
    The view that research with competent adults requires valid consent to be ethical perhaps finds its clearest expression in the Nuremberg Code, whose famous first principle asserts that “the voluntary consent of the human subject is absolutely essential.” In a similar vein, the United Nations International Covenant on Civil and Political Rights states that “no one shall be subjected without his free consent to medical or scientific experimentation.” Yet although some formulations of the consent principle allow no exceptions, (...)
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    Restricted treatments, inducements, and research participation.Sarah J. L. Edwards - 2006 - Bioethics 20 (2):77–91.
    ABSTRACT In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and (...)
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