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Bernice Elger [34]Bernice S. Elger [31]Bernice Simone Elger [17]Bernice E. Elger [1]
  1.  9
    Ethical Design of Intelligent Assistive Technologies for Dementia: A Descriptive Review.Marcello Ienca, Tenzin Wangmo, Fabrice Jotterand, Reto W. Kressig & Bernice Elger - 2018 - Science and Engineering Ethics 24 (4):1035-1055.
    The use of Intelligent Assistive Technology in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of ethical considerations in the (...)
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  2.  14
    An Update on the “Empirical Turn” in Bioethics: Analysis of Empirical Research in Nine Bioethics Journals.Tenzin Wangmo, Sirin Hauri, Eloise Gennet, Evelyn Anane-Sarpong, Veerle Provoost & Bernice S. Elger - 2018 - BMC Medical Ethics 19 (1):6.
    A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. A review of the same nine journals was conducted (...)
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  3.  66
    CRISPR and the Rebirth of Synthetic Biology.Raheleh Heidari, David Martin Shaw & Bernice Simone Elger - 2017 - Science and Engineering Ethics 23 (2):351-363.
    Emergence of novel genome engineering technologies such as clustered regularly interspaced short palindromic repeat has refocused attention on unresolved ethical complications of synthetic biology. Biosecurity concerns, deontological issues and human right aspects of genome editing have been the subject of in-depth debate; however, a lack of transparent regulatory guidelines, outdated governance codes, inefficient time-consuming clinical trial pathways and frequent misunderstanding of the scientific potential of cutting-edge technologies have created substantial obstacles to translational research in this area. While a precautionary principle (...)
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  4.  27
    Emotion and Value in the Evaluation of Medical Decision-Making Capacity: A Narrative Review of Arguments.Helena Hermann, Manuel Trachsel, Bernice S. Elger & Nikola Biller-Andorno - 2016 - Frontiers in Psychology 7.
    ver since the traditional criteria for medical decision-making capacity (understanding, appreciation, reasoning, evidencing a choice) were formulated, they have been criticized for not taking sufficient account of emotions or values that seem, according to the critics and in line with clinical experiences, essential to decision-making capacity. The aim of this paper is to provide a nuanced and structured overview of the arguments provided in the literature emphasizing the importance of these factors and arguing for their inclusion in competence evaluations. Moreover, (...)
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  5.  16
    Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare.Katharina M. Ruhe, Eva De Clercq, Tenzin Wangmo & Bernice S. Elger - 2016 - Journal of Bioethical Inquiry 13 (4):515-524.
    Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...)
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  6.  16
    Structural Racism in Precision Medicine: Leaving No One Behind.Tenzin Wangmo, Bernice Simone Elger, David Shaw, Andrea Martani & Lester Darryl Geneviève - 2020 - BMC Medical Ethics 21 (1):1-13.
    Precision medicine is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups. One often-neglected underlying reason why this might happen is the impact of structural racism on PM (...)
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  7.  18
    “We Need to Talk!” Barriers to GPs’ Communication About the Option of Physician-Assisted Suicide and Their Ethical Implications: Results From a Qualitative Study.Ina C. Otte, Corinna Jung, Bernice Elger & Klaus Bally - 2017 - Medicine, Health Care and Philosophy 20 (2):249-256.
    GPs usually care for their patients for an extended period of time, therefore, requests to not only discontinue a patient’s treatment but to assist a patient in a suicide are likely to create intensely stressful situations for physicians. However, in order to ensure the best patient care possible, the competent communication about the option of physician assisted suicide as well as the assessment of the origin and sincerity of the request are very important. This is especially true, since patients’ requests (...)
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  8.  27
    Parents’ and Physicians’ Perceptions of Children’s Participation in Decision-Making in Paediatric Oncology: A Quantitative Study.Michael Rost, Tenzin Wangmo, Felix Niggli, Karin Hartmann, Heinz Hengartner, Marc Ansari, Pierluigi Brazzola, Johannes Rischewski, Maja Beck-Popovic, Thomas Kühne & Bernice S. Elger - 2017 - Journal of Bioethical Inquiry 14 (4):555-565.
    The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision (...)
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  9.  14
    The Notion of Free Will and its Ethical Relevance for Decision-Making Capacity.Tobias Zürcher, Bernice Elger & Manuel Trachsel - 2019 - BMC Medical Ethics 20 (1):31.
    Obtaining informed consent from patients is a moral and legal duty and, thus, a key legitimation for medical treatment. The pivotal prerequisite for valid informed consent is decision-making capacity of the patient. Related to the question of whether and when consent should be morally and legally valid, there has been a long-lasting philosophical debate about freedom of will and the connection of freedom and responsibility. The scholarly discussion on decision-making capacity and its clinical evaluation does not sufficiently take into account (...)
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  10.  15
    Continuous Deep Sedation and Euthanasia in Pediatrics: Does One Really Exclude the Other for Terminally Ill Patients?Domnita O. Badarau, Eva De Clercq & Bernice S. Elger - 2019 - Journal of Medicine and Philosophy 44 (1):50-70.
    Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS is a (...)
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  11.  27
    Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients.Milenko Rakic, Isabelle Wienand, David Shaw, Rebecca Nast & Bernice S. Elger - 2017 - Science and Engineering Ethics 23 (2):375-388.
    We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully (...)
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  12. Evidence-Based Persuasion: An Ethical Imperative.David Shaw & Bernice Elger - 2013 - Journal of the American Medical Association 309 (16):1689-90.
    The primacy in modern medical ethics of the principle of respect for autonomy has led to the widespread assumption that it is unethical to change someone’s beliefs, because doing so would constitute coercion or paternalism., In this Viewpoint we suggest that persuasion is not necessarily paternalistic and is an essential component of modern medical practice.
     
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  13.  14
    Better to Know Than to Imagine: Including Children in Their Health Care.Tenzin Wangmo, Eva De Clercq, Katharina M. Ruhe, Maja Beck-Popovic, Johannes Rischewski, Regula Angst, Marc Ansari & Bernice S. Elger - 2017 - Ajob Empirical Bioethics 8 (1):11-20.
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  14.  39
    Memory Interventions in the Criminal Justice System: Some Practical Ethical Considerations.Laura Y. Cabrera & Bernice S. Elger - 2016 - Journal of Bioethical Inquiry 13 (1):95-103.
    In recent years, discussion around memory modification interventions has gained attention. However, discussion around the use of memory interventions in the criminal justice system has been mostly absent. In this paper we start by highlighting the importance memory has for human well-being and personal identity, as well as its role within the criminal forensic setting; in particular, for claiming and accepting legal responsibility, for moral learning, and for retribution. We provide examples of memory interventions that are currently available for medical (...)
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  15.  8
    Adolescent Oncofertility Discussions: Recommendations From a Systematic Literature Review.Dorit Barlevy, Bernice S. Elger, Tenzin Wangmo & Vardit Ravitsky - 2017 - Ajob Empirical Bioethics 8 (2):106-115.
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  16.  17
    Patient Education as Empowerment and Self-Rebiasing.Fabrice Jotterand, Antonio Amodio & Bernice S. Elger - 2016 - Medicine, Health Care and Philosophy 19 (4):553-561.
    The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or life (...)
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  17.  21
    The Beneficence of Hope: Findings From a Qualitative Study with Gout and Diabetes Patients.Isabelle Wienand, Milenko Rakic, David Shaw & Bernice Elger - 2018 - Journal of Bioethical Inquiry 15 (2):211-218.
    This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty ; hope as reflective uncertainty ; hope (...)
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  18.  7
    Paternalistic Breaches of Confidentiality in Prison: Mental Health Professionals’ Attitudes and Justifications.Bernice Simone Elger, Violet Handtke & Tenzin Wangmo - 2015 - Journal of Medical Ethics 41 (6):496-500.
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  19. Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings From an International Study.Capron Alexander Morgan, Mauron Alexandre, Elger Bernice Simone, Boggio Andrea, Ganguli-Mitra Agomoni & Biller-Andorno Nikola - 2009 - Kennedy Institute of Ethics Journal 19 (2):101-124.
  20.  3
    Evaluation of Decision-Making Capacity in Patients with Dementia: Challenges and Recommendations From a Secondary Analysis of Qualitative Interviews.Christopher Poppe, Bernice S. Elger, Tenzin Wangmo & Manuel Trachsel - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundEvaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of decision-making capacity evaluation in patients with dementia, we provide recommendations (...)
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  21.  24
    Application of Ethical Principles to Research Using Public Health Data in The Global South: Perspectives From Africa.Evelyn Anane‐Sarpong, Tenzin Wangmo, Osman Sankoh, Marcel Tanner & Bernice Simone Elger - 2018 - Developing World Bioethics 18 (2):98-108.
    Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally lower protective ethico-legal frameworks of (...)
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  22.  23
    Protecting Prisoners’ Autonomy with Advance Directives: Ethical Dilemmas and Policy Issues.Roberto Andorno, David M. Shaw & Bernice Elger - 2015 - Medicine, Health Care and Philosophy 18 (1):33-39.
    Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of (...)
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  23.  83
    Including Patients in Resuscitation Decisions in Switzerland: From Doing More to Doing Better.Samia A. Hurst, Maria Becerra, Arnaud Perrier, Noelle Junod Perron, Stéphane Cochet & Bernice Elger - 2013 - Journal of Medical Ethics 39 (3):158-165.
    Background Decisions regarding Cardio-Pulmonary Resuscitation (CPR) and Do Not Attempt Resuscitation (DNAR) orders remain demanding, as does including patients in the process. Objectives To explore physicians’ justification for CPR/DNAR orders and decisions regarding patient inclusion, as well as their reports of how they initiated discussions with patients. Methods We administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. Results Justifications were provided for 59% of DNAR orders and included (...)
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  24.  8
    Consent Requirements for Research with Human Tissue: Swiss Ethics Committee Members Disagree.Flora Colledge, Sophie De Massougnes & Bernice Elger - 2018 - BMC Medical Ethics 19 (1):93.
    In Switzerland, research with identifiable human tissue samples, and/or its accompanying data, must be approved by a research ethics committee before it can be allowed to take place. However, as the demand for such tissue has rapidly increased in recent years, and biobanks have been created to meet these needs, committees have had to deal with a growing number of such demands. Detailed instructions for evaluating every kind of tissue request are scarce. Committees charged with evaluating research protocols therefore sometimes (...)
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  25.  31
    Disclosure of Past Crimes: An Analysis of Mental Health Professionals' Attitudes Towards Breaching Confidentiality.Tenzin Wangmo, Violet Handtke & Bernice Simone Elger - 2014 - Journal of Bioethical Inquiry 11 (3):347-358.
    Ensuring confidentiality is the cornerstone of trust within the doctor–patient relationship. However, health care providers have an obligation to serve not only their patient’s interests but also those of potential victims and society, resulting in circumstances where confidentiality must be breached. This article describes the attitudes of mental health professionals when patients disclose past crimes unknown to the justice system. Twenty-four MHPs working in Swiss prisons were interviewed. They shared their experiences concerning confidentiality practices and attitudes towards breaching confidentiality in (...)
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  26.  8
    Medical Ethics in Correctional Healthcare: An International Comparison of Guidelines.Bernice Simone Elger - 2008 - Journal of Clinical Ethics 19 (3):234.
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  27.  27
    Research Involving Prisoners: Consensus and Controversies in International and European Regulations.Bernice S. Elger - 2008 - Bioethics 22 (4):224–238.
    This article examines international and European regulations on research involving prisoners for consensus, differences, and their consequences, and offers a critical evaluation of the various approaches. Agreement exists that prisoners are at risk of coercion, which might interfere with their ability to provide voluntary informed consent to research. Controversy exists about the magnitude of this risk and the consequences that should follow from this risk. Two strategies are proposed for a method of protecting prisoners that does not lead to discrimination: (...)
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  28. The Relevance of Relevance in Research.David Shaw & Bernice Elger - 2013 - Swiss Medical Weekly.
    A new Swiss law requires that any research involving humans must aim to answer "a relevant research question". This paper explains the relevance of the relevance criterion in research, analyses the Swiss and British guidelines on relevance, and proposes a framework for researchers and REC members that enables a clearer conception of the role of relevance in research. We conclude that research must be either scientifically or societally beneficial in order to qualify as relevant, and RECs therefore cannot avoid reviewing (...)
     
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  29.  13
    Autonomy and Reproductive Rights of Married Ikwerre Women in Rivers State, Nigeria.Chitu Womehoma Princewill, Ayodele Samuel Jegede, Tenzin Wangmo, Anita Riecher-Rössler & Bernice Simone Elger - 2017 - Journal of Bioethical Inquiry 14 (2):205-215.
    A woman’s lack of or limited reproductive autonomy could lead to adverse health effects, feeling of being inferior, and above all being unable to adequately care for her children. Little is known about the reproductive autonomy of married Ikwerre women of Rivers State, Nigeria. This study demonstrates how Ikwerre women understand the terms autonomy and reproductive rights and what affects the exercise of these rights. An exploratory research design was employed for this study. A semi-structured interview schedule was used to (...)
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  30.  11
    Is Decision-Making Capacity an “Essentially Contested” Concept in Pediatrics?Eva De Clercq, Katharina Ruhe, Michel Rost & Bernice Elger - 2017 - Medicine, Health Care and Philosophy 20 (3):425-433.
    Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...)
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  31.  10
    Expert Perspectives on Western European Prison Health Services: Do Ageing Prisoners Receive Equivalent Care?Wiebke Bretschneider & Bernice Simone Elger - 2014 - Journal of Bioethical Inquiry 11 (3):319-332.
    Health care in prison and particularly the health care of older prisoners are increasingly important topics due to the growth of the ageing prisoner population. The aim of this paper is to gain insight into the approaches used in the provision of equivalent health care to ageing prisoners and to confront the intuitive definition of equivalent care and the practical and ethical challenges that have been experienced by individuals working in this field. Forty interviews took place with experts working in (...)
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  32.  26
    Defining Nano, Nanotechnology and Nanomedicine: Why Should It Matter?Priya Satalkar, Bernice Simone Elger & David M. Shaw - 2016 - Science and Engineering Ethics 22 (5):1255-1276.
    Nanotechnology, which involves manipulation of matter on a ‘nano’ scale, is considered to be a key enabling technology. Medical applications of nanotechnology are expected to significantly improve disease diagnostic and therapeutic modalities and subsequently reduce health care costs. However, there is no consensus on the definition of nanotechnology or nanomedicine, and this stems from the underlying debate on defining ‘nano’. This paper aims to present the diversity in the definition of nanomedicine and its impact on the translation of basic science (...)
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  33.  32
    Prioritising Healthcare Workers for Ebola Treatment: Treating Those at Greatest Risk to Confer Greatest Benefit.Priya Satalkar, Bernice E. Elger & David M. Shaw - 2015 - Developing World Bioethics 15 (2):59-67.
    The Ebola epidemic in Western Africa has highlighted issues related to weak health systems, the politics of drug and vaccine development and the need for transparent and ethical criteria for use of scarce local and global resources during public health emergency. In this paper we explore two key themes. First, we argue that independent of any use of experimental drugs or vaccine interventions, simultaneous implementation of proven public health principles, community engagement and culturally sensitive communication are critical as these measures (...)
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  34.  29
    Getting a Fair Share: Attitudes and Perceptions of Biobank Stakeholders Concerning the Fairness of Sample Sharing.Flora Colledge & Bernice Elger - 2015 - Bioethics 29 (6):424-430.
    Biobanks are essential tools for furthering a broad range of medical research areas. However, despite the plethora of national and international laws and guidelines which apply to them, the access and sharing policies of biobanks are only sparsely addressed by regulatory bodies. The ‘give and take’ process of biosample sharing is largely left up to biobank stakeholders themselves to oversee; it is therefore both in stakeholders' power, and in their interest, to ensure that sample accessibility is fair. This is an (...)
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  35.  37
    Protecting Human Health and Security in Digital Europe: How to Deal with the “Privacy Paradox”?Isabell Büschel, Rostane Mehdi, Anne Cammilleri, Yousri Marzouki & Bernice Elger - 2014 - Science and Engineering Ethics 20 (3):639-658.
    This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed (...)
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  36. Emerging Issues in Prison Health.Bernice Elger, Catherine Ritter & Heino Stöver (eds.) - forthcoming - Springer.
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  37.  39
    End-of-Life Decision Making in Pediatrics: Literature Review on Children's and Adolescents’ Participation.Katharina M. Ruhe, Domnita O. Badarau, Bernice S. Elger & Tenzin Wangmo - 2014 - Ajob Empirical Bioethics 5 (2):44-54.
  38.  27
    Understanding Death in Custody: A Case for a Comprehensive Definition.Géraldine Ruiz, Tenzin Wangmo, Patrick Mutzenberg, Jessica Sinclair & Bernice Simone Elger - 2014 - Journal of Bioethical Inquiry 11 (3):387-398.
    Prisoners sometimes die in prison, either due to natural illness, violence, suicide, or a result of imprisonment. The purpose of this study is to understand deaths in custody using qualitative methodology and to argue for a comprehensive definition of death in custody that acknowledges deaths related to the prison environment. Interviews were conducted with 33 experts, who primarily work as lawyers or forensic doctors with national and/or international organisations. Responses were coded and analysed qualitatively. Defining deaths in custody according to (...)
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  39.  11
    Sample and Data Sharing Barriers in Biobanking: Consent, Committees, and Compromises.Flora Colledge, Kirsten Persson, Bernice Elger & David Shaw - 2014 - Annals of Diagnostic Pathology 18 (2):78-81.
    The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a (...)
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  40.  31
    Attitudes of Future Lawyers and Psychologists to the Use of Genetic Testing for Criminal Behavior.Bernice S. Elger - 2005 - Cambridge Quarterly of Healthcare Ethics 14 (3):329-345.
    Developments in the last several years have sparked renewed interest in the ethics of research involving humans. Issues relating to the global extent of research and its guiding principles are of particular importance to researchers, health officials, and individual ethics committees who want a deeper and more encompassing inquiry regarding the foundation and evolution of human research. This department of CQ launches a long overdue effort to explore these wider issues. Readers are invited to submit papers to Charles MacKay, 5011 (...)
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  41. Persuading Bereaved Families to Permit Organ Donation.David Shaw & Bernice Elger - 2014 - Intensive Care Medicine 40:96-98.
    The annual UK potential donor audit captures families’ reasons for not consenting to donation of their deceased family members’ organs . Given that many families’ refusals and vetoes are based on false beliefs, cognitive bias and misunderstanding, it is incumbent upon doctors, nurses and transplant coordinators to invest sufficient time to facilitate informed consent or authorization. While such families are distressed, organ donation rates could be substantially improved if they were made aware of any mistaken beliefs, using recently suggested criteria (...)
     
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  42.  26
    Proceed with Diligence.Bernice S. Elger - 2012 - Journal of Medical Ethics 38 (9):529-530.
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  43.  27
    Research on Prisoners – a Comparison Between the Iom Committee Recommendations (2006) and European Regulations.Bernice S. Elger & Anne Spaulding - 2010 - Bioethics 24 (1):1-13.
    The Institute of Medicine (IOM) Committee on Ethical Considerations for Revisions to DHHS Regulations for Protection of Prisoners Involved in Research published its report in 2006. It was charged with developing an ethical framework for the conduct of research with prisoners and identifying the safeguards and conditions necessary to ensure that research with prisoners is conducted ethically. The recommendations contained in the IOM report differ from current European regulations in several ways, some being more restrictive and some less so. For (...)
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  44.  21
    When Information Can Save Lives: The Duty to Warn Relatives About Sudden Cardiac Death and Environmental Risks.Bernice Elger, Katarzyna Michaud & Patrice Mangin - 2010 - Hastings Center Report 40 (3):39-45.
  45.  25
    “You Cannot Collect Data Using Your Own Resources and Put It on Open Access”: Perspectives From Africa About Public Health Data‐Sharing.Evelyn Anane‐Sarpong, Tenzin Wangmo, Claire Leonie Ward, Osman Sankoh, Marcel Tanner & Bernice Simone Elger - 2018 - Developing World Bioethics 18 (4):394-405.
    Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation (...)
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  46.  13
    Cancer Care in Romania: Challenges and Pitfalls of Children's and Adolescents' Multifaceted Involvement.Domnita O. Badarau, Eva De Clercq, Tenzin Wangmo, Monica Dragomir, Ingrid Miron, Thomas Kühne & Bernice S. Elger - 2016 - Journal of Medical Ethics 42 (12):757-761.
    Communication about diagnosis and medical treatment for children suffering from life-threatening illnesses is complex. It is a primary step in involving underage patients and families in care and lays the foundation for obtaining parental permission and patient assent for treatment. In practice child participation in care is often difficult to obtain due to patients' different and sometimes fluctuating preferences, but also parents' protective strategies. Physicians may be susceptible to parental wishes to limit information and feel uncomfortable discussing issues related to (...)
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  47.  26
    Decision Making in Pediatric Oncology: Views of Parents and Physicians in Two European Countries.Domnita O. Badarau, Katharina Ruhe, Thomas Kühne, Eva De Clercq, Anca Colita, Bernice S. Elger & Tenzin Wangmo - 2017 - Ajob Empirical Bioethics 8 (1):21-31.
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  48.  4
    The Meaning and Importance of Genetic Relatedness: Fertility Preservation Decision Making Among Israeli Adolescent Cancer Survivors and Their Parents.Dorit Barlevy, Bernice S. Elger, Tenzin Wangmo, Shifra Ash & Vardit Ravitsky - unknown
    Background: With multiple options available today to become a parent, how does the matter of genetic relatedness factor into adolescent cancer patients’ fertility preservation decision making? This study reports on and normatively analyzes this aspect of FP decision making. Methods: A convenience sample of Israeli adolescent cancer survivors and their parents were invited to participate in individual, semi-structured interviews. Results: In discussing the importance of genetic relatedness to future children or grandchildren, participants repeatedly brought up the interrelated issues of nature, (...)
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  49.  1
    Digital Technologies for Schizophrenia Management: A Descriptive Review.Olga Chivilgina, Bernice S. Elger & Fabrice Jotterand - 2021 - Science and Engineering Ethics 27 (2):1-22.
    While the implementation of digital technology in psychiatry appears promising, there is an urgent need to address the implications of the absence of ethical design in the early development of such technologies. Some authors have noted the gap between technology development and ethical analysis and have called for an upstream examination of the ethical issues raised by digital technologies. In this paper, we address this suggestion, particularly in relation to digital healthcare technologies for patients with schizophrenia spectrum disorders. The introduction (...)
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  50. “Conferring Authorship”: Biobank Stakeholders’ Experiences with Publication Credit in Collaborative Research.Flora Colledge, Bernice Elger & David Shaw - 2013 - PLoS ONE 8:e76686.
    Background: Multi-collaborator research is increasingly becoming the norm in the field of biomedicine. With this trend comes the imperative to award recognition to all those who contribute to a study; however, there is a gap in the current “gold standard” in authorship guidelines with regards to the efforts of those who provide high quality biosamples and data, yet do not play a role in the intellectual development of the final publication. -/- Methods and findings: We carried out interviews with 36 (...)
     
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