818 results match your criteria Bmc Medical Ethics[Journal]


Perceptions of plagiarism by biomedical researchers: an online survey in Europe and China.

BMC Med Ethics 2020 Jun 1;21(1):44. Epub 2020 Jun 1.

Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.

Background: Plagiarism is considered as serious research misconduct, together with data fabrication and falsification. However, little is known about biomedical researchers' views on plagiarism. Moreover, it has been argued - based on limited empirical evidence - that perceptions of plagiarism depend on cultural and other determinants. Read More

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http://dx.doi.org/10.1186/s12910-020-00473-7DOI Listing

Self-evaluated ethical competence of a practicing physiotherapist: a national study in Finland.

BMC Med Ethics 2020 May 29;21(1):43. Epub 2020 May 29.

Department of Nursing Science, Turku University Hospital, University of Turku, Turku, Finland.

Background: Patients 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00469-3DOI Listing

Medical and midwifery students' views on the use of conscientious objection in abortion care, following legal reform in Chile: a cross-sectional study.

BMC Med Ethics 2020 May 24;21(1):42. Epub 2020 May 24.

Instituto de Investigación en Ciencias Sociales, Universidad Diego Portales, Santiago, Chile.

Background: In 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 (CO) in abortion care, including allowing institutions to register as objectors. This study assesses medical and midwifery students' support for CO, following legal reform. Read More

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http://dx.doi.org/10.1186/s12910-020-00484-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7245938PMC

Knowledge and attitudes of physicians toward research ethics and scientific misconduct in Lebanon.

BMC Med Ethics 2020 May 14;21(1):39. Epub 2020 May 14.

Faculty of Medicine, Beirut Arab University, Beirut, Lebanon.

Background: Despite 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.

Methods: This 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 research ethics guidelines (Lebanese decrees/Laws and CNRS chart of ethics) and scientific misconduct and misbehaviors. Read More

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http://dx.doi.org/10.1186/s12910-020-00475-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7227247PMC

What passive euthanasia is.

Authors:
Iain Brassington

BMC Med Ethics 2020 May 14;21(1):41. Epub 2020 May 14.

CSEP/ Law, University of Manchester, Oxford Road, Manchester, M13 9PL, UK.

Background: Euthanasia 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 Text: At 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 order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. Read More

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http://dx.doi.org/10.1186/s12910-020-00481-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7227198PMC

Prioritising access to pandemic influenza vaccine: a review of the ethics literature.

BMC Med Ethics 2020 May 14;21(1):40. Epub 2020 May 14.

Sydney Health Ethics, Sydney School of Public Health, University of Sydney, Level 1, Medical Foundation Building K25, Sydney, NSW, 2006, Australia.

Background: The 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00477-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7224123PMC

Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation.

BMC Med Ethics 2020 May 13;21(1):38. Epub 2020 May 13.

Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne, Level 4, 207 Bouverie St, Melbourne, VIC, 3010, Australia.

Background: In 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 Text: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Read More

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http://dx.doi.org/10.1186/s12910-020-00483-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7222560PMC

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.

BMC Med Ethics 2020 May 12;21(1):36. Epub 2020 May 12.

Department of Intensive Care, Erasmus MC - University Medical Centre Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, the Netherlands.

Background: The European Union (EU) 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 (TBI), aiming to inform and stimulate initiatives to improve efficiency. Read More

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http://dx.doi.org/10.1186/s12910-020-00480-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216427PMC

Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia.

BMC Med Ethics 2020 May 12;21(1):35. Epub 2020 May 12.

King Abdullah International Medical Research Center (KAIMRC), King Saud Bin Abdulaziz University for Health Sciences, King Abdulaziz Medical City, Ministry of National Guard - Health Affairs, P.O. Box 22490, Mail Code 1515, Riyadh, 11426, Saudi Arabia.

Background: With 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 mandated to establish ethical guidelines and regulations. Read More

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http://dx.doi.org/10.1186/s12910-020-00482-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216643PMC

Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed.

BMC Med Ethics 2020 May 11;21(1):33. Epub 2020 May 11.

Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany.

Background: Biomarker 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00476-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216419PMC

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

BMC Med Ethics 2020 May 11;21(1):34. Epub 2020 May 11.

Canada Research Chair in Patient and Public Partnership, CHUM Research Center (CRCHUM) and University of Montreal, Montreal, Canada.

Background: Partnering 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0460-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216517PMC

COVID-19: where is the national ethical guidance?

Authors:
Richard Huxtable

BMC Med Ethics 2020 05 1;21(1):32. Epub 2020 May 1.

Centre for Ethics in Medicine, Population Health Sciences, Bristol Medical School, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.

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http://dx.doi.org/10.1186/s12910-020-00478-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7193541PMC

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries.

BMC Med Ethics 2020 Apr 25;21(1):31. Epub 2020 Apr 25.

The Centre for Infectious Diseases and Microbiology - Public Health, Westmead, Sydney, Australia.

Background: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies - pathogen whole genome sequencing (WGS) 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00474-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7183724PMC

Autonomous decisions by couples in reproductive care.

BMC Med Ethics 2020 Apr 25;21(1):30. Epub 2020 Apr 25.

Centre for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, 751 22, Uppsala, Sweden.

Background: Preconception Expanded Carrier Screening (ECS) 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00470-wDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7183638PMC

A palliative care approach in psychiatry: clinical implications.

BMC Med Ethics 2020 Apr 19;21(1):29. Epub 2020 Apr 19.

Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, 171 77, Stockholm, Sweden.

Background: Traditionally, 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 Text: This 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 could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. Read More

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http://dx.doi.org/10.1186/s12910-020-00472-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7168959PMC

Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.

BMC Med Ethics 2020 Apr 15;21(1):27. Epub 2020 Apr 15.

University of Maryland School of Medicine, Baltimore, MD, USA.

Background: Protecting 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0456-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7158072PMC

Ethical arguments concerning human-animal chimera research: a systematic review.

BMC Med Ethics 2020 Mar 23;21(1):24. Epub 2020 Mar 23.

Institute of Philosophy, Leibniz University Hannover, Im Moore 21, 30167, Hannover, Germany.

Background: 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00465-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7092670PMC

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.

BMC Med Ethics 2020 Apr 15;21(1):28. Epub 2020 Apr 15.

Department of Nursing and Midwifery, Faculty of medicine, University of Ostrava, Ostrava, Czech Republic.

Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) 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 (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).

Methods: Following 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 on the system of care. Read More

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http://dx.doi.org/10.1186/s12910-020-00471-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7161107PMC

An interprofessional cohort analysis of student interest in medical ethics education: a survey-based quantitative study.

BMC Med Ethics 2020 Apr 8;21(1):26. Epub 2020 Apr 8.

Center for Bioethics and Health Policy, Medical College of Georgia at Augusta University, Augusta, GA, 30909, USA.

Background: There 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.

Methods: In January 2018, following the successful implementation of a peer-led, grassroots medical ethics curriculum, student leaders under faculty guidance conducted a cross-sectional survey with 562 of 1357 responses received (41% overall response rate) among students enrolled in the School of Medicine, College of Nursing, Doctor of Physical Therapy and BS/(D) MD Professional Scholars programs at The Medical College of Georgia at Augusta University. Read More

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http://dx.doi.org/10.1186/s12910-020-00468-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7140336PMC

Impact of legislation and public funding on oncofertility: a survey of Canadian, French and Moroccan pediatric hematologists/oncologists.

BMC Med Ethics 2020 Apr 3;21(1):25. Epub 2020 Apr 3.

Bioethics Program, Department of Social and Preventive Medicine, School of Public Health, University of Montreal, Montréal, Québec, Canada.

Background: Chemotherapy 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. Read More

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http://dx.doi.org/10.1186/s12910-020-00466-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7118810PMC

Clarifying how to deploy the public interest criterion in consent waivers for health data and tissue research.

BMC Med Ethics 2020 Mar 20;21(1):23. Epub 2020 Mar 20.

Centre for Biomedical Ethics, National University of Singapore, Yong Loo Lin School of Medicine, Block MD11, Clinical Research Centre, #02-03, 10 Medical Drive, Singapore, 117597, Singapore.

Background: Several 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 (IRBs) and regulators trying to implement the criterion.

Main Text: This paper clarifies how the public interest criterion can be defensibly deployed. Read More

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http://dx.doi.org/10.1186/s12910-020-00467-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7083029PMC

Dishonesty and research misconduct within the medical profession.

BMC Med Ethics 2020 Mar 18;21(1):22. Epub 2020 Mar 18.

Independent Pharmaceutical Consultant, Middlesex, UK.

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, the UK General Medical Council's own data demonstrates a historic inattentiveness to the ease with which doctors can engage in research misconduct. Read More

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http://dx.doi.org/10.1186/s12910-020-0461-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7079390PMC

Developing a toolkit for engagement practice: sharing power with communities in priority-setting for global health research projects.

Authors:
Bridget Pratt

BMC Med Ethics 2020 Mar 14;21(1):21. Epub 2020 Mar 14.

Centre for Health Equity, School of Population and Global Health, University of Melbourne, 207 Bouverie St Street, Carlton, VIC, 3053, Australia.

Background: Communities' 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0462-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071780PMC

Disease awareness or subtle product placement? Orphan diseases featured in the television series "House, M.D." - a cross-sectional analysis.

BMC Med Ethics 2020 Mar 14;21(1):20. Epub 2020 Mar 14.

Division of Pediatric Neurology and Metabolic Medicine, Center for Rare Diseases, Center for Pediatric and Adolescent Medicine, University Hospital Heidelberg, INF 430, 69120, Heidelberg, Germany.

Background: Approximately 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0463-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071776PMC

Is it morally permissible for general practitioners to disclose their opinion on a woman's decision on abortion?

BMC Med Ethics 2020 Mar 12;21(1):19. Epub 2020 Mar 12.

King's College London, London, UK.

Background: This 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 them, they may be particularly exposed to such situations. Read More

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http://dx.doi.org/10.1186/s12910-020-0464-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7068960PMC

A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences.

BMC Med Ethics 2020 03 2;21(1):18. Epub 2020 Mar 2.

THIS Institute (The Healthcare Improvement Studies Institute), Cambridge University, Clifford Allbutt Building, Cambridge, CB2 0AH, UK.

Background: Internationally, 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 the issues involved in such a change in process. Read More

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http://dx.doi.org/10.1186/s12910-020-0459-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053049PMC

Structural racism in precision medicine: leaving no one behind.

BMC Med Ethics 2020 02 19;21(1):17. Epub 2020 Feb 19.

Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.

Background: Precision medicine (PM) 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0457-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7031946PMC
February 2020

Still a moral dilemma: how Ethiopian professionals providing abortion come to terms with conflicting norms and demands.

BMC Med Ethics 2020 02 11;21(1):16. Epub 2020 Feb 11.

Centre for Medical Ethics, Institute of Health and Society, University of Oslo, Pb. 1130 Blindern, N-0318, Oslo, Norway.

Background: The 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0458-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7014608PMC
February 2020
1.600 Impact Factor

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals' views from Lebanon and Quebec.

BMC Med Ethics 2020 02 10;21(1):15. Epub 2020 Feb 10.

Bioethics Program, Department of Social and Preventive Medicine, School of Public Health, Université de Montréal, Montreal, Canada.

Background: The 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0455-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7011468PMC
February 2020
1.600 Impact Factor

Stakeholder views on the acceptability of human infection studies in Malawi.

BMC Med Ethics 2020 02 5;21(1):14. Epub 2020 Feb 5.

Malawi-Liverpool Wellcome Trust Clinical Research Programme, P.O. Box 30096, Chichiri, Blantyre, 3, Malawi.

Background: Human infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. Read More

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http://dx.doi.org/10.1186/s12910-020-0454-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003337PMC
February 2020

Disclosure to genetic relatives without consent - Australian genetic professionals' awareness of the health privacy law.

BMC Med Ethics 2020 02 4;21(1):13. Epub 2020 Feb 4.

The University of Sydney, Northern Clinical School, Faculty of Medicine and Health, Level 7, Kolling Institute of Medical Research, Royal North Shore Hospital, Sydney, NSW, Australia.

Background: When a genetic mutation is identified in a family member (proband), 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 (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). Read More

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http://dx.doi.org/10.1186/s12910-020-0451-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7001268PMC
February 2020

Data Access Committees.

BMC Med Ethics 2020 02 3;21(1):12. Epub 2020 Feb 3.

Department of Philosophy and Bioethics, Faculty of Health Sciences, Jagiellonian University Medical College, ul. Michalowskiego 12, Krakow, Poland.

Background: Sharing 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 (DAC), rather than making data openly available without restrictions. Read More

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http://dx.doi.org/10.1186/s12910-020-0453-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6998828PMC
February 2020

Why genomics researchers are sometimes morally required to hunt for secondary findings.

BMC Med Ethics 2020 01 31;21(1):11. Epub 2020 Jan 31.

Biomedical Ethics Research Group, Murdoch Children's Research Institute, Melbourne, Australia.

Background: 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 (for example, by conducting additional analyses to search for findings outside the scope of the research question). Read More

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http://dx.doi.org/10.1186/s12910-020-0449-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6995186PMC
January 2020

Addressing harm in moral case deliberation: the views and experiences of facilitators.

BMC Med Ethics 2020 01 30;21(1):10. Epub 2020 Jan 30.

Department of Philosophy and Ethics, VUB (Vrije Universiteit Brussel), Pleinlaan 2, 1050, Brussel, Belgium.

Background: 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 (MCD) in dealing with tragic situations. Read More

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http://dx.doi.org/10.1186/s12910-020-0450-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6993317PMC
January 2020

Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.

BMC Med Ethics 2020 01 30;21(1). Epub 2020 Jan 30.

Department of Public Health and Primary Care, Philosophy of Medicine and Ethics Research Group, Ghent University, Corneel Heymanslaan 10 - Building 6K3, 9000, Ghent, Belgium.

Background: Incidental findings (IFs) and secondary findings (SFs), 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0452-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6990492PMC
January 2020

Legal and ethical framework for global health information and biospecimen exchange - an international perspective.

BMC Med Ethics 2020 01 21;21(1). Epub 2020 Jan 21.

Clinical Trials Center, University Hospital Zurich, Zürich, Switzerland.

Background: 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0448-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6975025PMC
January 2020

Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.

BMC Med Ethics 2020 01 16;21(1). Epub 2020 Jan 16.

National Center for Tumor Diseases (NCT), Department of Medical Oncology, Heidelberg University Hospital, Heidelberg, Germany.

Background: As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) 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.

Methods: In a first step we clarify some central concepts such as "raw data"; in a second step we sketch the international legal framework. Read More

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http://dx.doi.org/10.1186/s12910-020-0446-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6966790PMC
January 2020

Important situations that capture moral distress in paediatric oncology.

BMC Med Ethics 2020 01 13;21(1). Epub 2020 Jan 13.

Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Tomtebodavägen 18A, SE-171 77, Stockholm, Sweden.

Background: The paediatric Moral Distress Scale-Revised (MDS-R) 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 paediatric MDS-R, among healthcare professionals (HCPs) in paediatric oncology. Read More

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http://dx.doi.org/10.1186/s12910-020-0447-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6958740PMC
January 2020

Researcher and study participants' perspectives of consent in clinical studies in four referral hospitals in Vietnam.

BMC Med Ethics 2020 01 10;21(1). Epub 2020 Jan 10.

Oxford University Clinical Research Unit, Hospital for Tropical Disease, 764 Vo Van Kiet Street, District 5, Ho Chi Minh City, Vietnam.

Background: 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.

Methods: We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. Read More

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http://dx.doi.org/10.1186/s12910-020-0445-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6954581PMC
January 2020

Refusals to perform ritual circumcision: a qualitative study of doctors' professional and ethical reasoning.

BMC Med Ethics 2020 01 10;21(1). Epub 2020 Jan 10.

Centre for Medical Ethics, Institute of Health and Society, University of Oslo, Oslo, Norway.

Background: 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. Read More

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http://dx.doi.org/10.1186/s12910-020-0444-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6954583PMC
January 2020

Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects.

BMC Med Ethics 2020 01 8;21(1). Epub 2020 Jan 8.

Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, Basel, Switzerland.

Background: Digital Pills (DP) 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. Read More

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http://dx.doi.org/10.1186/s12910-019-0443-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950823PMC
January 2020

What is it like to use a BCI? - insights from an interview study with brain-computer interface users.

BMC Med Ethics 2020 01 6;21(1). Epub 2020 Jan 6.

Institute of Philosophy, Faculty of Cultural and Social Sciences, FernUniversität in Hagen, Universitätsstr. 33, 58097, Hagen, Germany.

Background: The neurotechnology behind brain-computer interfaces (BCIs) 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. Read More

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http://dx.doi.org/10.1186/s12910-019-0442-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945485PMC
January 2020

Informed consent procedure in a double blind randomized anthelminthic trial on Pemba Island, Tanzania: do pamphlet and information session increase caregivers knowledge?

BMC Med Ethics 2020 01 6;21(1). Epub 2020 Jan 6.

Swiss Tropical and Public Health Institute, Basel, Switzerland.

Background: 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. Read More

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http://dx.doi.org/10.1186/s12910-019-0441-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945786PMC
January 2020
1.600 Impact Factor

Dying too soon or living too long? Withdrawing treatment from patients with prolonged disorders of consciousness after Re Y.

Authors:
Richard Huxtable

BMC Med Ethics 2019 12 30;20(1):91. Epub 2019 Dec 30.

Centre for Ethics in Medicine, Population Health Sciences, Bristol Medical School, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.

Background: In the ruling in Y [2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling in Y confirms that the court may still be approached to decide difficult or contested cases, but there is otherwise no routine requirement that the judges be approached. Read More

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http://dx.doi.org/10.1186/s12910-019-0424-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6936052PMC
December 2019

Assessing attitudes towards medical assisted dying in Canadian family medicine residents: a cross-sectional study.

BMC Med Ethics 2019 12 27;20(1):103. Epub 2019 Dec 27.

Department of Family Medicine, University of Ottawa, Ottawa, Ontario, Canada.

Background: Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death (PHD) in general and the specific provision of MAID (e. Read More

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http://dx.doi.org/10.1186/s12910-019-0440-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6935122PMC
December 2019

Culture and personal influences on cardiopulmonary resuscitation- results of international survey.

BMC Med Ethics 2019 12 26;20(1):102. Epub 2019 Dec 26.

Intensive Care Unit, Shaare Zedek Medical Center, Jerusalem, Israel and Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.

Background: The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether local culture and physician preferences may affect spur-of-the-moment decisions in unexpected in-hospital cardiac arrest. Read More

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http://dx.doi.org/10.1186/s12910-019-0439-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933623PMC
December 2019

Research approvals iceberg: helping it melt away.

BMC Med Ethics 2019 12 24;20(1):100. Epub 2019 Dec 24.

Independent consultant and trainer in research ethics, Portsmouth, UK.

Background: In their paper "Research approvals iceberg: how a 'low-key' study in England needed 89 professionals to approve it and how we can do better" Petrova and Barclay highlight concerns with the health research regulatory environment in the UK.

Discussion: As long-standing chairs of NHS research ethics committees, researchers, and also academics in research ethics, we are also often frustrated with the regulatory process in the UK. However, we think that Petrova and Barclay's analysis is misleading because it conflates research ethics with governance and funding processes, thus failing to adequately distinguish between the national coordinating function of the Health Research Authority, local research governance processes, and interactions with research sponsors and/or the Clinical Research Network. Read More

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http://dx.doi.org/10.1186/s12910-019-0434-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6929443PMC
December 2019

Response to Correspondence from Kolstoe and colleagues concerning our paper entitled, Research approvals iceberg: How a 'low-key' study in England needed 89 professionals to approve it and how we can do better.

BMC Med Ethics 2019 12 24;20(1):101. Epub 2019 Dec 24.

Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.

In their letter to the Editor in this issue, Kolstoe and Carpenter challenge a core aspect of our recently published case study of research approvals [BMC Medical Ethics 20:7] by arguing that we conflate research ethics with governance and funding processes. Amongst the key concerns of the authors are: 1) that our paper exemplifies a typical conflation of concepts such as governance, integrity and ethics, with significant consequences for claims around the responsibility and accountability of the organisations involved; 2) that, as a consequence of this conflation, we misrepresent the ethics review process, including in fundamental aspects such as the ethics approval-opinion distinction; 3) that it is difficult to see scope for greater integration of processes such as applying for funding, research approvals, Patient and Public Involvement, etc., as suggested by us. Read More

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http://dx.doi.org/10.1186/s12910-019-0433-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6929303PMC
December 2019

Community perspectives on randomisation and fairness in a cluster randomised controlled trial in Zambia.

BMC Med Ethics 2019 12 21;20(1):99. Epub 2019 Dec 21.

Centre for Intervention Science in Maternal and Child Health (CISMAC), Centre for International Health, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.

Background: One important ethical issue in randomised controlled trials (RCTs) is randomisation. Relatively little is known about how participating individuals and communities understand and perceive central aspects of randomisation such as equality, fairness, transparency and accountability in community-based trials. The aim of this study was to understand and explore study communities' perspectives of the randomisation process in a cluster RCT in rural Zambia studying the effectiveness of different support packages for adolescent girls on early childbearing. Read More

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http://dx.doi.org/10.1186/s12910-019-0421-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6925446PMC
December 2019
1.600 Impact Factor