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  1. Perspectives Regarding Privacy in Clinical Research Among Research Professionals From the Arab Region: An Exploratory Qualitative Study.Latifa Adarmouch, Marwan Felaefel, Robert Wachbroit & Henry Silverman - 2020 - BMC Medical Ethics 21 (1):1-16.
    BackgroundProtecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research.MethodsWe adopted an exploratory qualitative approach by the use of focus group (...)
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  2.  2
    Impact of Legislation and Public Funding on Oncofertility: A Survey of Canadian, French and Moroccan Pediatric Hematologists/Oncologists.Aliya Oulaya Affdal, Michael Grynberg, Laila Hessissen & Vardit Ravitsky - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundChemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer of (...)
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  3.  2
    Ethical Challenges Regarding the Use of Stem Cells: Interviews with Researchers From Saudi Arabia.Ghiath Alahmad, Sarah Aljohani & Muath Fahmi Najjar - 2020 - BMC Medical Ethics 21 (1):1-7.
    BackgroundWith the huge number of patients who suffer from chronic and incurable diseases, medical scientists continue to search for new curative methods for patients in dire need of treatment. Interest in stem cells is growing, generating high expectations in terms of the possible benefits that could be derived from stem cell research and therapy. However, regardless of the hope of stem cells changing and improving lives, there are many ethical, religious, and political challenges and controversies that affect the research, and (...)
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  4.  3
    Addressing Ethical Challenges of Disclosure in Dementia Prediction: Limitations of Current Guidelines and Suggestions to Proceed.Zümrüt Alpinar-Sencan & Silke Schicktanz - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundBiomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected.Main textThis paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues (...)
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  5.  2
    Knowledge and Attitudes of Physicians Toward Research Ethics and Scientific Misconduct in Lebanon.Bilal Azakir, Hassan Mobarak, Sami Al Najjar, Azza Abou El Naga & Najlaa Mashaal - 2020 - BMC Medical Ethics 21 (1).
    BackgroundDespite the implementation of codes and declarations of medical research ethics, unethical behavior is still reported among researchers. Most of the medical faculties have included topics related to medical research ethics and developed ethical committees; yet, in some cases, unethical behaviors are still observed, and many obstacles are still conferring to applying these guidelines.MethodsThis cross-sectional questionnaire-based study was conducted by interviewing randomly selected 331 Lebanese physicians across Lebanon, to assess their awareness, knowledge and attitudes on practice regarding international and national (...)
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  6. Ethical Issues and Practical Barriers in Internet-Based Suicide Prevention Research: A Review and Investigator Survey.Eleanor Bailey, Charlotte Mühlmann, Simon Rice, Maja Nedeljkovic, Mario Alvarez-Jimenez, Lasse Sander, Alison L. Calear, Philip J. Batterham & Jo Robinson - 2020 - BMC Medical Ethics 21 (1).
    BackgroundPeople who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.MethodThis was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information (...)
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  7.  4
    Legal and ethical framework for global health information and biospecimen exchange - an international perspective.Lara Bernasconi, Selçuk Şen, Luca Angerame, Apolo P. Balyegisawa, Damien Hong Yew Hui, Maximilian Hotter, Chung Y. Hsu, Tatsuya Ito, Francisca Jörger, Wolfgang Krassnitzer, Adam T. Phillips, Rui Li, Louise Stockley, Fabian Tay, Charlotte von Heijne Widlund, Ming Wan, Creany Wong, Henry Yau, Thomas F. Hiemstra, Yagiz Uresin & Gabriela Senti - 2020 - BMC Medical Ethics 21 (1):1-8.
    The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to significantly advance medical knowledge. However, sharing of such resources for international collaboration is hampered by the lack of clarity about ethical and legal requirements for transfer of data and samples across international borders. Here, the International Clinical Trial Center Network reports the legal and ethical requirements governing data and sample exchange (...)
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  8.  2
    Medical and Midwifery Students’ Views on the Use of Conscientious Objection in Abortion Care, Following Legal Reform in Chile: A Cross-Sectional Study.M. Antonia Biggs, Lidia Casas, Alejandra Ramm, C. Finley Baba & Sara P. Correa - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundIn August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman’s life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated use of conscientious objection in abortion care, including allowing institutions to register as objectors. This study assesses medical and midwifery students’ support for CO, following legal reform.MethodsFrom October 2017 to May 2018, we surveyed medical and midwifery students from seven universities located in Santiago, Chile. Universities (...)
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  9.  4
    What Passive Euthanasia Is.Iain Brassington - 2020 - BMC Medical Ethics 21 (1).
    BackgroundEuthanasia can be thought of as being either active or passive; but the precise definition of “passive euthanasia” is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia.Main textAt the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in (...)
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  10. Development and Psychometric Evaluation of a New Tool for Measuring the Attitudes of Patients with Progressive Neurological Diseases to Ethical Aspects of End-of-Life Care.Radka Bužgová & Radka Kozáková - 2020 - BMC Medical Ethics 21 (1):1-12.
    BackgroundKnowing the opinions of patients with Progressive Neurological Diseases and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire.MethodsFollowing focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions (...)
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  11.  2
    An Interprofessional Cohort Analysis of Student Interest in Medical Ethics Education: A Survey-Based Quantitative Study.Mikalyn T. DeFoor, Yunmi Chung, Julie K. Zadinsky, Jeffrey Dowling & Richard W. Sams - 2020 - BMC Medical Ethics 21 (1):1-9.
    BackgroundThere is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for more formalized medical ethics education and assessed preferences for teaching methods in a graduate level medical ethics curriculum.MethodsIn January 2018, following the successful implementation of a peer-led, grassroots medical ethics curriculum, student leaders under faculty (...)
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  12.  3
    Community Perspectives on the Benefits and Risks of Technologically Enhanced Communicable Disease Surveillance Systems: A Report on Four Community Juries.Chris Degeling, Stacy M. Carter, Antoine M. van Oijen, Jeremy McAnulty, Vitali Sintchenko, Annette Braunack-Mayer, Trent Yarwood, Jane Johnson & Gwendolyn L. Gilbert - 2020 - BMC Medical Ethics 21 (1):1-14.
    BackgroundOutbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy.MethodFour community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, (...)
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  13.  1
    Disclosure to Genetic Relatives Without Consent – Australian Genetic Professionals’ Awareness of the Health Privacy Law.Jane Fleming, Ainsley J. Newson, Kate Dunlop, Kristine Barlow-Stewart & Natalia Meggiolaro - 2020 - BMC Medical Ethics 21 (1):1-10.
    BackgroundWhen a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals is in conflict with Privacy laws (...)
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  14. A Systematic Review of Patient Access to Medical Records in the Acute Setting: Practicalities, Perspectives and Ethical Consequences.Zoë Fritz, Isla L. Kuhn & Stephanie N. D’Costa - 2020 - BMC Medical Ethics 21 (1).
    BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of (...)
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  15. Stakeholder Views on the Acceptability of Human Infection Studies in Malawi.Kate Gooding, Stephen B. Gordon, Michael Parker, Rodrick Sambakunsi, Markus Gmeiner, Jamie Rylance, Kondwani Jambo & Blessings M. Kapumba - 2020 - BMC Medical Ethics 21 (1):1-15.
    BackgroundHuman infection studies are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. We examined stakeholder perceptions about the acceptability and ethics of HIS in Malawi, to inform decisions about planned pneumococcal challenge research and wider understanding of HIS ethics in LMICs.MethodsWe conducted 6 deliberative focus groups and 15 follow-up interviews (...)
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  16.  10
    COVID-19: Where is the National Ethical Guidance?Richard Huxtable - 2020 - BMC Medical Ethics 21 (1):1-3.
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  17.  1
    Is It Morally Permissible for General Practitioners to Disclose Their Opinion on a Woman’s Decision on Abortion?Selena Knight & Lynnlette Aung - 2020 - BMC Medical Ethics 21 (1).
    BackgroundThis paper considers ethical dilemmas arising where a patient asks their General Practitioner for advice and their personal opinion regarding whether or not to have an abortion. Patients often seek their General Practitioner’s advice regarding treatments and procedures, which may occasionally lead to the General Practitioner facing a difficult dilemma of whether to share their personal opinion with their patient. As General Practitioners are more accessible as the first point of contact for patients and often have a closer relationship with (...)
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  18.  7
    What is It Like to Use a BCI? – Insights From an Interview Study with Brain-Computer Interface Users.Johannes Kögel, Ralf J. Jox & Orsolya Friedrich - 2020 - BMC Medical Ethics 21 (1):1-14.
    The neurotechnology behind brain-computer interfaces raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability, psychosocial identity, consent, privacy and data security. This study aims to assess BCI users’ experiences, self-observations and attitudes in their own right and looks for social and ethical implications. We conducted nine semi-structured interviews with BCI users, who used the technology for medical reasons. The transcribed interviews were analyzed according to the Grounded Theory coding method. BCI users perceive (...)
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  19.  3
    Why genomics researchers are sometimes morally required to hunt for secondary findings.Julian J. Koplin, Julian Savulescu & Danya F. Vears - 2020 - BMC Medical Ethics 21 (1):1-11.
    Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...)
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  20. Self-Evaluated Ethical Competence of a Practicing Physiotherapist: A National Study in Finland.Helena Leino-Kilpi, Anna Tolvanen, Pauli Puukka, Riitta Suhonen & Kati Kulju - 2020 - BMC Medical Ethics 21 (1).
    BackgroundPatients have the right to equal, respectful treatment. Nowadays, one third of patient complaints concern health care staff’s behavior towards patients. Ethically safe care requires ethical competence, which has been addressed as a core competence in physiotherapy. It has been defined in terms of character strength, ethical awareness, moral judgment skills in decision-making, and willingness to do good. The purpose of this study was to analyze the ethical competence of practicing physiotherapists.MethodA self-evaluation instrument based on an analysis of a concept (...)
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  21.  8
    Refusals to perform ritual circumcision: a qualitative study of doctors’ professional and ethical reasoning.Liv Astrid Litleskare, Mette Tolås Strander, Reidun Førde & Morten Magelssen - 2020 - BMC Medical Ethics 21 (1):1-7.
    Ritual circumcision of infant boys is controversial in Norway, as in many other countries. The procedure became a part of Norwegian public health services in 2015. A new law opened for conscientious objection to the procedure. We have studied physicians’ refusals to perform ritual circumcision as an issue of professional ethics. Qualitative interview study with 10 urologists who refused to perform ritual circumcision from six Norwegian public hospitals. Interviews were recorded and transcribed, then analysed with systematic text condensation, a qualitative (...)
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  22.  2
    Still a Moral Dilemma: How Ethiopian Professionals Providing Abortion Come to Terms with Conflicting Norms and Demands.Morten Magelssen, Jan Helge Solbakk, Viva Combs Thorsen & Demelash Bezabih Ewnetu - 2020 - BMC Medical Ethics 21 (1):1-7.
    BackgroundThe Ethiopian law on abortion was liberalized in 2005. However, as a strongly religious country, the new law has remained controversial from the outset. Many abortion providers have religious allegiances, which begs the question how to negotiate the conflicting demands of their jobs and their commitment to their patients on the one hand, and their religious convictions and moral values on the other.MethodA qualitative study based on in-depth interviews with 30 healthcare professionals involved in abortion services in either private/non-governmental clinics (...)
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  23.  2
    Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects.Andrea Martani, Lester Darryl Geneviève, Christopher Poppe, Carlo Casonato & Tenzin Wangmo - 2020 - BMC Medical Ethics 21 (1):1-13.
    Digital Pills are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patients’ physiological data. Although DP are a promising innovation in the field of digital medicine, their use has also raised a number of ethical concerns. These ethical concerns, however, have been expressed principally from a theoretical perspective, whereas an ethical analysis with a more empirically oriented approach is lacking. There is also a lack (...)
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  24.  2
    Partnering with Patients in Healthcare Research: A Scoping Review of Ethical Issues, Challenges, and Recommendations for Practice.Joé T. Martineau, Asma Minyaoui & Antoine Boivin - 2020 - BMC Medical Ethics 21 (1):1-20.
    BackgroundPartnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting (...)
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  25.  2
    Autonomous Decisions by Couples in Reproductive Care.Amal Matar, Anna T. Höglund, Pär Segerdahl & Ulrik Kihlbom - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundPreconception Expanded Carrier Screening is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. (...)
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  26. Too Much Safety? Safeguards and Equal Access in the Context of Voluntary Assisted Dying Legislation.Rosalind McDougall & Bridget Pratt - 2020 - BMC Medical Ethics 21 (1):1-10.
    BackgroundIn June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.Main textIn this paper, we analyse the ethical relationship between legislative “safeguards” and equal access. Drawing primarily on Ruger’s model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, (...)
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  27.  2
    Informed Consent Procedure in a Double Blind Randomized Anthelminthic Trial on Pemba Island, Tanzania: Do Pamphlet and Information Session Increase Caregivers Knowledge?Marta S. Palmeirim, Amanda Ross, Brigit Obrist, Ulfat A. Mohammed, Shaali M. Ame, Said M. Ali & Jennifer Keiser - 2020 - BMC Medical Ethics 21 (1):1-9.
    In clinical research, obtaining informed consent from participants is an ethical and legal requirement. Conveying the information concerning the study can be done using multiple methods yet this step commonly relies exclusively on the informed consent form alone. While this is legal, it does not ensure the participant’s true comprehension. New effective methods of conveying consent information should be tested. In this study we compared the effect of different methods on the knowledge of caregivers of participants of a clinical trial (...)
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  28.  1
    Data Access Committees.Jan Piasecki & Phaik Yeong Cheah - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundSharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee, rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, (...)
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  29.  2
    Developing a Toolkit for Engagement Practice: Sharing Power with Communities in Priority-Setting for Global Health Research Projects.Bridget Pratt - 2020 - BMC Medical Ethics 21 (1).
    BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist version of the toolkit. (...)
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  30.  3
    Dishonesty and Research Misconduct Within the Medical Profession.Habib Rahman & Stephen Ankier - 2020 - BMC Medical Ethics 21 (1):1-6.
    While there has been much discussion of how the scientific establishment’s culture can engender research misconduct and scientific irreproducibility, this has been discussed much less frequently with respect to the medical profession. Here the authors posit that a lack of self-criticism, an encouragement of novel scientific research generated by the recruitment policies of the UK Royal Training Colleges along with insufficient training in the sciences are core reasons as to why research misconduct and dishonesty prevail within the medical community. Furthermore, (...)
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  31.  2
    Implementation Challenges for an Ethical Introduction of Noninvasive Prenatal Testing: A Qualitative Study of Healthcare Professionals’ Views From Lebanon and Quebec.Vardit Ravitsky, Labib Ghulmiyyah, Gilles Bibeau, Anne-Marie Laberge, Meredith Vanstone & Hazar Haidar - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundThe clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon (...)
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  32.  5
    Disease Awareness or Subtle Product Placement? Orphan Diseases Featured in the Television Series “House, M.D.” - a Cross-Sectional Analysis.Markus Ries, William K. Mountford, Juliane Rausch & Konstantin Mechler - 2020 - BMC Medical Ethics 21 (1).
    BackgroundApproximately 7% of the general population is affected by an orphan disease, which, in the United States, is defined as affecting fewer than 1 in 1500 people. Disease awareness is often low and time-to-diagnosis delayed. Different legislations worldwide have created incentives for pharmaceutical companies to develop drugs for orphan diseases. A journalistic article in Bloomberg Businessweek has claimed that pharmaceutical companies have tried marketing orphan drugs by placing a specific disease into the popular television series “House, M.D.” which features diagnostic (...)
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  33.  6
    Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.Marlies Saelaert, Heidi Mertes, Tania Moerenhout, Elfride De Baere & Ignaas Devisch - 2020 - BMC Medical Ethics 21 (1):1-12.
    Incidental findings and secondary findings, being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts (...)
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  34.  4
    Important situations that capture moral distress in paediatric oncology.Margareta af Sandeberg, Cecilia Bartholdson & Pernilla Pergert - 2020 - BMC Medical Ethics 21 (1):1-9.
    The paediatric Moral Distress Scale-Revised was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents’ unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations in the Swedish (...)
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  35.  17
    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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  36.  9
    Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.Christoph Schickhardt, Henrike Fleischer & Eva C. Winkler - 2020 - BMC Medical Ethics 21 (1):1-12.
    As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...)
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  37.  5
    Addressing harm in moral case deliberation: the views and experiences of facilitators.Benita Spronk, Guy Widdershoven & Hans Alma - 2020 - BMC Medical Ethics 21 (1):1-11.
    In healthcare practice, care providers are confronted with decisions they have to make, directly affecting patients and inevitably harmful. These decisions are tragic by nature. This study investigates the role of Moral Case Deliberation in dealing with tragic situations. In MCD, caregivers reflect on real-life dilemmas, involving a choice between two ethical claims, both resulting in moral damage and harm. One element of the reflection process is making explicit the harm involved in the choice. How harmful are our decisions? We (...)
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  38.  4
    A Palliative Care Approach in Psychiatry: Clinical Implications.Mattias Strand, Manne Sjöstrand & Anna Lindblad - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundTraditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry.Main textThis paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change of perspective from a curative to a palliative approach (...)
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  39.  1
    How Do 66 European Institutional Review Boards Approve One Protocol for an International Prospective Observational Study on Traumatic Brain Injury? Experiences From the CENTER-TBI Study.Marjolein Timmers, Jeroen T. J. M. van Dijck, Roel P. J. van Wijk, Valerie Legrand, Ernest van Veen, Andrew I. R. Maas, David K. Menon, Giuseppe Citerio, Nino Stocchetti & Erwin J. O. Kompanje - 2020 - BMC Medical Ethics 21 (1):1-14.
    BackgroundThe European Union aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury, aiming to inform and stimulate initiatives to improve efficiency.MethodsWe reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury. Documents included detailed (...)
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  40.  3
    Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam.Jennifer Ilo Van Nuil, Thi Thanh Thuy Nguyen, Thanh Nhan Le Nguyen, Van Vinh Chau Nguyen, Mary Chambers, Thi Dieu Ngan Ta, Laura Merson, Thi Phuong Dung Nguyen, Minh Tu Van Hoang, Michael Parker, Susan Bull & Evelyne Kestelyn - 2020 - BMC Medical Ethics 21 (1):1-12.
    Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...)
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  41.  3
    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.
    BackgroundPrecision 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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    Prioritising Access to Pandemic Influenza Vaccine: A Review of the Ethics Literature. [REVIEW]Jane H. Williams & Angus Dawson - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundThe world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need some method of prioritising access.Main textThis paper reports a critical interpretative review of the published literature that discusses ethical arguments used to justify how we could prioritise vaccine during an influenza pandemic. We found that the focus of the literature was often on proposing different groups as priorities. (...)
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    Ethical Arguments Concerning Human-Animal Chimera Research: A Systematic Review.Koko Kwisda, Lucie White & Dietmar Hübner - 2020 - BMC Medical Ethics 21:1-14.
    The burgeoning field of biomedical research involving the mixture of human and animal materials has attracted significant ethical controversy. Due to the many dimensions of potential ethical conflict involved in this type of research, and the wide variety of research projects under discussion, it is difficult to obtain an overview of the ethical debate. This paper attempts to remedy this by providing a systematic review of ethical reasons in academic publications on human-animal chimera research. We conducted a systematic review of (...)
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