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  1.  15
    Giovanni De Grandis & Vidar Halgunset (2016). Conceptual and Terminological Confusion Around Personalised Medicine: A Coping Strategy. BMC Medical Ethics 17 (43):1-12.
    The idea of personalised medicine (PM) has gathered momentum recently, attracting funding and generating hopes as well as scepticism. As PM gives rise to differing interpretations, there have been several attempts to clarify the concept. In an influential paper published in this journal, Schleidgen and colleagues have proposed a precise and narrow definition of PM on the basis of a systematic literature review. Given that their conclusion is at odds with those of other recent attempts to understand PM, we consider (...)
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  2.  4
    Adamu Addissie, Serebe Abay, Yeweyenhareg Feleke, Melanie Newport, Bobbie Farsides & Gail Davey (2016). Cluster randomized trial assessing the effects of rapid ethical assessment on informed consent comprehension in a low-resource setting. BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  3.  4
    AbdelAziem A. Ali, Moawia E. Hummeida, Yasir A. M. Elhassan, Wisal O. M. Nabag, Mohammed Ahmed A. Ahmed & Gamal K. Adam (2016). Concept of Defensive Medicine and Litigation Among Sudanese Doctors Working in Obstetrics and Gynecology. BMC Medical Ethics 17 (1):1-5.
    BackgroundObstetrics and gynaecology always has reputation for being a highly litigious. The field of obstetrics and gynaecology is surrounded by different circumstances that stimulate the doctors to practice defensive medicine.MethodsThis study was directed to assess the extent and the possible effect of defensive medicine phenomenon on medical decision making among different grades of obstetric and gynaecologic Sudanese doctors, and to determine any experience of medical litigations with respect to sources and factors associated with it.ResultsA total of 117 doctors were approached, (...)
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  4.  4
    Gambo Aliyu & Salah M. Mahmud (2016). Postal Recruitment and Consent Obtainment From Index Cases of Narcolepsy. BMC Medical Ethics 17 (1):1-6.
    BackgroundAccess to research volunteers may be hampered by low numbers of cases and few eligible participants for rare diseases in clinical settings.MethodsWe recruited volunteers and obtained informed consent by mail from narcolepsy cases in a case-control study, and here in we report feasibility, response rate, timeliness and cost. We invited index cases into the study by mail through their care-giving physicians then mailed study information and consent forms to cases that indicated interest in the study.ResultsOf the 33 index cases invited, (...)
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  5.  3
    Nazila Assasi, Jean-Eric Tarride, Daria O’Reilly & Lisa Schwartz (2016). Steps Toward Improving Ethical Evaluation in Health Technology Assessment: A Proposed Framework. BMC Medical Ethics 17 (1):34.
    BackgroundWhile evaluation of ethical aspects in health technology assessment has gained much attention during the past years, the integration of ethics in HTA practice still presents many challenges. In response to the increasing demand for expansion of health technology assessment methodology to include ethical issues more systematically, this article reports on a multi-stage study that aimed at construction of a framework for improving the integration of ethics in HTA.MethodsThe framework was developed through the following phases: 1) a systematic review and (...)
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  6.  3
    Jessica Bell, Mirko Ancillotti, Victoria Coathup, Sarah Coy, Tessel Rigter, Travis Tatum, Jasjote Grewal, Faruk Berat Akcesme, Jovana Brkić, Anida Causevic-Ramosevac, Goran Milovanovic, Marianna Nobile, Cristiana Pavlidis, Teresa Finlay & Jane Kaye (2016). Challenges and opportunities for ELSI early career researchers. BMC Medical Ethics 17 (1):1.
    Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research (...)
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  7.  4
    Rosemarie D. L. C. Bernabe, Ghislaine J. M. W. Van Thiel & Johannes J. M. Van Delden (2016). What Do International Ethics Guidelines Say in Terms of the Scope of Medical Research Ethics? BMC Medical Ethics 17 (1):1-18.
    BackgroundIn research ethics, the most basic question would always be, “which is an ethical issue, which is not?” Interestingly, depending on which ethics guideline we consult, we may have various answers to this question. Though we already have several international ethics guidelines for biomedical research involving human participants, ironically, we do not have a harmonized document which tells us what these various guidelines say and shows us the areas of consensus. In this manuscript, we attempted to do just that.MethodsWe extracted (...)
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  8.  4
    Louise M. Bezuidenhout & Michael Morrison (2016). Between Scylla and Charybdis: Reconciling Competing Data Management Demands in the Life Sciences. BMC Medical Ethics 17 (1):29.
    BackgroundThe widespread sharing of biological and biomedical data is recognised as a key element in facilitating translation of scientific discoveries into novel clinical applications and services. At the same time, twenty-first century states are increasingly concerned that this data could also be used for purposes of bioterrorism. There is thus a tension between the desire to promote the sharing of data, as encapsulated by the Open Data movement, and the desire to prevent this data from ‘falling into the wrong hands’ (...)
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  9.  3
    Giles Birchley, Kerry Jones, Richard Huxtable, Jeremy Dixon, Jenny Kitzinger & Linda Clare (2016). Dying Well with Reduced Agency: A Scoping Review and Thematic Synthesis of the Decision-Making Process in Dementia, Traumatic Brain Injury and Frailty. BMC Medical Ethics 17 (1):46.
    BackgroundIn most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we (...)
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  10.  2
    Wahid Bouida, Mohamed Habib Grissa, Asma Zorgati, Kaouthar Beltaief, Hamdi Boubaker, Asma Sriha, Riadh Boukef & Semir Nouira (2016). Willingness to Participate in Health Research: Tunisian Survey. BMC Medical Ethics 17 (1):47.
    BackgroundFew studies have identified the willingness rate of developing countries population to be enrolled in clinical trials.MethodsAll participants including patients, healthy volunteers and doctors completed a questionnaire to examine factors affecting the consent to participate in medical research.ResultsOverall, 80 % of the included population agree to participate in health research. This rate was lower for trials dealing with life-threatening diseases. Altruism and perceived risk of harm were the main reason to respectively accept or refuse to participate in clinical trials. Factors (...)
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  11.  3
    Isabelle Budin-Ljøsne & Jennifer R. Harris (2016). Patient and interest organizations’ views on personalized medicine: a qualitative study. BMC Medical Ethics 17 (1):1.
    Personalized medicine aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs. Semi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach. The PIO representatives supported (...)
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  12.  3
    Don Chalmers, Dianne Nicol, Jane Kaye, Jessica Bell, Alastair V. Campbell, Calvin W. L. Ho, Kazuto Kato, Jusaku Minari, Chih-Hsing Ho, Colin Mitchell, Fruzsina Molnár-Gábor, Margaret Otlowski, Daniel Thiel, Stephanie M. Fullerton & Tess Whitton (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  13.  1
    Victoria Coathup, Harriet J. A. Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P. Takahashi & Kazuto Kato (2016). Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan. BMC Medical Ethics 17 (1):51.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  14.  4
    Jonathan Mensah Dapaah & Kodjo A. Senah (2016). HIV/AIDS Clients, Privacy and Confidentiality; the Case of Two Health Centres in the Ashanti Region of Ghana. BMC Medical Ethics 17 (1):41.
    BackgroundWhile most studies on HIV/AIDS often identify stigmatization and patients’ unwillingness to access health care as critical problems in the control of the pandemic, very few studies have focused on the possible consequences of accessing health care by sero-positives. This paper examines the socio-psychological trauma patients experience in their desire to access health care in two health facilities in the Ashanti Region of Ghana.MethodsThrough participant observation, informal conversation and in-depth interviews, data were collected from health workers and clients of the (...)
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  15.  3
    Jack de Groot, Maria van Hoek, Cornelia Hoedemaekers, Andries Hoitsma, Hans Schilderman, Wim Smeets, Myrra Vernooij-Dassen & Evert van Leeuwen (2016). Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives. BMC Medical Ethics 17 (1):1.
    In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned (...)
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  16.  4
    T. Fischer, K. B. Brothers, P. Erdmann & M. Langanke (2016). Clinical Decision-Making and Secondary Findings in Systems Medicine. BMC Medical Ethics 17 (1):32.
    BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working to generate systems (...)
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  17.  3
    Morenike Oluwatoyin Folayan, Aminu Yakubu, Bridget Haire & Kristin Peterson (2016). Ebola Vaccine Development Plan: Ethics, Concerns and Proposed Measures. BMC Medical Ethics 17 (1):1-8.
    BackgroundThe global interest in developing therapies for Ebola infection management and its prevention is laudable. However the plan to conduct an emergency immunization program specifically for healthcare workers using experimental vaccines raises some ethical concerns. This paper shares perspectives on these concerns and suggests how some of them may best be addressed.DiscussionThe recruitment of healthcare workers for Ebola vaccine research has challenges. It could result in coercion of initially dissenting healthcare workers to assist in the management of EVD infected persons (...)
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  18.  4
    Mirko D. Garasic & Andrea Lavazza (2016). Moral and Social Reasons to Acknowledge the Use of Cognitive Enhancers in Competitive-Selective Contexts. BMC Medical Ethics 17 (1):1-12.
    BackgroundAlthough some of the most radical hypothesis related to the practical implementations of human enhancement have yet to become even close to reality, the use of cognitive enhancers is a very tangible phenomenon occurring with increasing popularity in university campuses as well as in other contexts. It is now well documented that the use of cognitive enhancers is not only increasingly common in Western countries, but also gradually accepted as a normal procedure by the media as well. In fact, its (...)
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  19.  3
    Arthur Maciel Nunes Gonçalves, Clarissa de Rosalmeida Dantas & Claudio E. M. Banzato (2016). Values and DSM-5: Looking at the Debate on Attenuated Psychosis Syndrome. BMC Medical Ethics 17 (1):1-8.
    BackgroundAlthough values have increasingly received attention in psychiatric literature over the last three decades, their role has been only partially acknowledged in psychiatric classification endeavors. The review process of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders received harsh criticism, and was even considered secretive by some authors. Also, it lacked an official discussion of values at play. In this perspective paper we briefly discuss the interplay of some values in the scientific and non-scientific debate around (...)
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  20.  5
    Tobias Hainz, Sabine Bossert & Daniel Strech (2016). Collective Agency and the Concept of ‘Public’ in Public Involvement: A Practice-Oriented Analysis. BMC Medical Ethics 17 (1):1-14.
    BackgroundPublic involvement activities are promoted as measures for ensuring good governance in challenging fields, such as biomedical research and innovation. Proponents of public involvement activities include individual researchers as well as non-governmental and governmental organizations. However, the concept of ‘public’ in public involvement deserves more attention by researchers because it is not purely theoretical: it has important practical functions in the guidance, evaluation and translation of public involvement activities.DiscussionThis article focuses on collective agency as one property a public as a (...)
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  21.  2
    Bente Hamnes, Yvonne van Eijk-Hustings & Jette Primdahl (2016). Readability of Patient Information and Consent Documents in Rheumatological Studies. BMC Medical Ethics 17 (1):42.
    BackgroundBefore participation in medical research an informed consent must be obtained. This study investigates whether the readability of patient information and consent documents corresponds to the average educational level of participants in rheumatological studies in the Netherlands, Denmark, and Norway.Methods24 PICDs from studies were collected and readability was assessed independently using the Gunning’s Fog Index and Simple Measure of Gobbledygook grading.ResultsThe mean score for the FOG and SMOG grades were 14.2 and 14.2 respectively. The mean FOG and SMOG grades were (...)
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  22.  4
    Bjørn Hofmann (2016). Incidental Findings of Uncertain Significance: To Know or Not to Know - That is Not the Question. BMC Medical Ethics 17 (1):1-9.
    BackgroundAlthough the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance. The eager to feedback information appears to enter the (...)
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  23.  5
    Bjørn Hofmann (2016). Erratum to: Incidental findings of uncertain significance: To know or not to know – that is not the question. BMC Medical Ethics 17 (1):1.
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  24.  6
    Ari R. Joffe, Meredith Bara, Natalie Anton & Nathan Nobis (2016). The Ethics of Animal Research: A Survey of the Public and Scientists in North America. BMC Medical Ethics 17 (1):1-12.
    BackgroundTo determine whether the public and scientists consider common arguments in support of animal research convincing.MethodsAfter validation, the survey was sent to samples of public, Amazon Mechanical Turk, a Canadian city festival and children’s hospital), medical students, and scientists. We presented questions about common arguments to justify the moral permissibility of AR. Responses were compared using Chi-square with Bonferonni correction.ResultsThere were 1220 public [SSI, n = 586; AMT, n = 439; Festival, n = 195; Hospital n = 107], 194/331 medical (...)
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  25.  6
    Angeliki Kerasidou & Ruth Horn (2016). Making Space for Empathy: Supporting Doctors in the Emotional Labour of Clinical Care. BMC Medical Ethics 17 (1):1-5.
    BackgroundThe academic and medical literature highlights the positive effects of empathy for patient care. Yet, very little attention has been given to the impact of the requirement for empathy on the physicians themselves and on their emotional wellbeing.DiscussionThe medical profession requires doctors to be both clinically competent and empathetic towards the patients. In practice, accommodating both requirements can be difficult for physicians. The image of the technically skilful, rational, and emotionally detached doctor dominates the profession, and inhibits physicians from engaging (...)
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  26.  6
    Niels Lynøe, Sara NattochDag, Magnus Lindskog & Niklas Juth (2016). Heed or disregard a cancer patient’s critical blogging? An experimental study of two different framing strategies. BMC Medical Ethics 17 (1):1.
    We have examined healthcare staff attitudes of toward a blogging cancer patient who publishes critical posts about her treatment and their possible effect on patient-staff relationships and treatment decisions. We used two versions of a questionnaire containing a vignette based on a modified real case involving a 39-year-old cancer patient who complained on her blog about how she was encountered and the treatment she received. Initially she was not offered a new, and expensive treatment, which might have influenced her perception (...)
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  27.  7
    Kristin Bakke Lysdahl, Wija Oortwijn, Gert Jan van der Wilt, Pietro Refolo, Dario Sacchini, Kati Mozygemba, Ansgar Gerhardus, Louise Brereton & Bjørn Hofmann (2016). Ethical analysis in HTA of complex health interventions. BMC Medical Ethics 17 (1):1.
    In the field of health technology assessment, there are several approaches that can be used for ethical analysis. However, there is a scarcity of literature that critically evaluates and compares the strength and weaknesses of these approaches when they are applied in practice. In this paper, we analyse the applicability of some selected approaches for addressing ethical issues in HTA in the field of complex health interventions. Complex health interventions have been the focus of methodological attention in HTA. However, the (...)
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  28.  3
    Morten Magelssen, Magne Supphellen, Per Nortvedt & Lars Johan Materstvedt (2016). Attitudes Towards Assisted Dying Are Influenced by Question Wording and Order: A Survey Experiment. BMC Medical Ethics 17 (1):24.
    BackgroundSurveys on attitudes towards assisted dying play an important role in informing public debate, policy and legislation. Unfortunately, surveys are often designed with insufficient attention to framing effects; that is, effects on the respondents’ stated attitudes caused by question wording and context. The purpose of this study was to demonstrate and measure such framing effects.MethodsSurvey experiment in which an eight-question survey on attitudes towards assisted dying was distributed to Norwegian citizens through a web-based panel. Two variations of question wording as (...)
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  29.  3
    Alastair Matheson (2016). The ICMJE Recommendations and Pharmaceutical Marketing – Strengths, Weaknesses and the Unsolved Problem of Attribution in Publication Ethics. BMC Medical Ethics 17 (1):1-10.
    BackgroundThe International Committee of Medical Journal Editors Recommendations set ethical and editorial standards for article publication in most leading medical journals. Here, I examine the strengths and weaknesses of the Recommendations in the prevention of commercial bias in industry-financed journal literature, on three levels – scholarly discourse, article content, and article attribution.DiscussionWith respect to overall discourse, the most important measures in the ICMJE Recommendations are for enforcing clinical trial registration and controlling duplicate publication. With respect to article content, the ICMJE (...)
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  30.  4
    Alastair Matheson (2016). The ICMJE Recommendations. BMC Medical Ethics 17 (1):1-10.
    BackgroundThe International Committee of Medical Journal Editors Recommendations set ethical and editorial standards for article publication in most leading medical journals. Here, I examine the strengths and weaknesses of the Recommendations in the prevention of commercial bias in industry-financed journal literature, on three levels – scholarly discourse, article content, and article attribution.DiscussionWith respect to overall discourse, the most important measures in the ICMJE Recommendations are for enforcing clinical trial registration and controlling duplicate publication. With respect to article content, the ICMJE (...)
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  31.  7
    Jude Mikal, Samantha Hurst & Mike Conway (2016). Ethical issues in using Twitter for population-level depression monitoring: a qualitative study. BMC Medical Ethics 17 (1):1.
    Recently, significant research effort has focused on using Twitter to investigate mental health at the population-level. While there has been influential work in developing ethical guidelines for Internet discussion forum-based research in public health, there is currently limited work focused on addressing ethical problems in Twitter-based public health research, and less still that considers these issues from users’ own perspectives. In this work, we aim to investigate public attitudes towards utilizing public domain Twitter data for population-level mental health monitoring using (...)
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  32.  2
    Keymanthri Moodley, Theresa Rossouw, Ciara Staunton & Christopher J. Colvin (2016). Synergies, Tensions and Challenges in HIV Prevention, Treatment and Cure Research: Exploratory Conversations with HIV Experts in South Africa. BMC Medical Ethics 17 (1):26.
    BackgroundThe ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa over the past 3 decades. However, HIV cure research is relatively new to the region and significant ethical and social challenges are anticipated. There has been no published empirical enquiry in Africa into key informant perspectives on HIV cure research. Consequently, this study was conducted to gain preliminary data from South African HIV clinicians, researchers and activists.MethodsIn-depth interviews were conducted on a purposive sample (...)
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  33.  5
    Inés Morán-Sánchez, Aurelio Luna, Maria Sánchez-Muñoz, Beatriz Aguilera-Alcaraz & Maria D. Pérez-Cárceles (2016). Decision-Making Capacity for Research Participation Among Addicted People: A Cross-Sectional Study. BMC Medical Ethics 17 (1):1-10.
    BackgroundInformed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research.Methods53 subjects with DSM-5 diagnoses of a Substance Use Disorder and 50 non psychiatric comparison subjects participated in the survey from December 2014 to March 2015. This cross-sectional study was carried out (...)
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  34. Minsu Ock, Hyun Joo Kim, Min-Woo Jo & Sang-il Lee (2016). Perceptions of the General Public and Physicians Regarding Open Disclosure in Korea: A Qualitative Study. BMC Medical Ethics 17 (1):50.
    BackgroundExperience with open disclosure and its study are restricted to certain western countries. In addition, there are concerns that open disclosure may be less suitable in non-western countries. The present study explored and compared the in-depth perceptions of the general public and physicians regarding open disclosure in Korea.MethodsWe applied the COREQ checklist to this qualitative study. We conducted 20 in-depth interviews and four focus group discussions with 16 physicians and 18 members of the general public. In-depth interviews and focus group (...)
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  35.  3
    Odile Ouwe Missi Oukem-Boyer, Nchangwi Syntia Munung & Godfrey B. Tangwa (2016). Small is beautiful: demystifying and simplifying standard operating procedures: a model from the ethics review and consultancy committee of the Cameroon Bioethics Initiative. BMC Medical Ethics 17 (1):1.
    Research ethics review is a critical aspect of the research governance framework for human subjects research. This usually requires that research protocols be submitted to a research ethics committee for review and approval. This has led to very rapid developments in the domain of research ethics, as RECs proliferate all over the globe in rhyme with the explosion in human subjects research. The work of RECs has increasingly become elaborate, complex, and in many cases urgent, necessitating supporting rules and procedures (...)
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  36.  2
    Stacey A. Page, Kiran Pohar Manhas & Daniel A. Muruve (2016). A Survey of Patient Perspectives on the Research Use of Health Information and Biospecimens. BMC Medical Ethics 17 (1):48.
    BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a (...)
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  37.  4
    Clare Partridge (2016). BMC Medical Ethics Reviewer Acknowledgement 2015. BMC Medical Ethics 17 (1):1-5.
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  38.  2
    Kasper Raus, Kenneth Chambaere & Sigrid Sterckx (2016). Controversies Surrounding Continuous Deep Sedation at the End of Life: The Parliamentary and Societal Debates in France. BMC Medical Ethics 17 (1):1.
    Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a (...)
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  39.  4
    Susanne Rebers, Neil K. Aaronson, Flora E. Van Leeuwen & Marjanka K. Schmidt (2016). Exceptions to the Rule of Informed Consent for Research with an Intervention. BMC Medical Ethics 17 (1):1-11.
    BackgroundIn specific situations it may be necessary to make an exception to the general rule of informed consent for scientific research with an intervention. Earlier reviews only described subsets of arguments for exceptions to waive consent.MethodsHere, we provide a more extensive literature review of possible exceptions to the rule of informed consent and the accompanying arguments based on literature from 1997 onwards, using both Pubmed and PsycINFO in our search strategy.ResultsWe identified three main categories of arguments for the acceptability of (...)
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  40.  9
    Maria Romøren, Reidar Pedersen & Reidun Førde (2016). How Do Nursing Home Doctors Involve Patients and Next of Kin in End-of-Life Decisions? A Qualitative Study From Norway. BMC Medical Ethics 17 (1):1-8.
    BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors (...)
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  41.  1
    Miguel Ángel Royo-Bordonada & Fernando J. García López (2016). Ethical considerations surrounding the response to Ebola: the Spanish experience. BMC Medical Ethics 17 (1):49.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  42.  5
    Sabine Salloch (2016). Same same but different: why we should care about the distinction between professionalism and ethics. BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  43.  2
    Wike Seekles, Guy Widdershoven, Paul Robben, Gonny van Dalfsen & Bert Molewijk (2016). Evaluation of Moral Case Deliberation at the Dutch Health Care Inspectorate: A Pilot Study. BMC Medical Ethics 17 (1):31.
    BackgroundMoral case deliberation as a form of clinical ethics support is usually implemented in health care institutions and educational programs. While there is no previous research on the use of clinical ethics support on the level of health care regulation, employees of regulatory bodies are regularly confronted with moral challenges. This pilot study describes and evaluates the use of MCD at the Dutch Health Care Inspectorate.The objective of this pilot study is to investigate: 1) the current way of dealing with (...)
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  44.  9
    Amanda Sibley, Andrew J. Pollard, Raymond Fitzpatrick & Mark Sheehan (2016). Developing a New Justification for Assent. BMC Medical Ethics 17 (1):1-9.
    BackgroundCurrent guidelines do not clearly outline when assent should be attained from paediatric research participants, nor do they detail the necessary elements of the assent process. This stems from the fact that the fundamental justification behind the concept of assent is misunderstood. In this paper, we critically assess three widespread ethical arguments used for assent: children’s rights, the best interests of the child, and respect for a child’s developing autonomy. We then outline a newly-developed two-fold justification for the assent process: (...)
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  45.  7
    Carl Tollef Solberg & Espen Gamlund (2016). The Badness of Death and Priorities in Health. BMC Medical Ethics 17 (1):1-9.
    BackgroundThe state of the world is one with scarce medical resources where longevity is not equally distributed. Given such facts, setting priorities in health entails making difficult yet unavoidable decisions about which lives to save. The business of saving lives works on the assumption that longevity is valuable and that an early death is worse than a late death. There is a vast literature on health priorities and badness of death, separately. Surprisingly, there has been little cross-fertilisation between the academic (...)
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  46.  4
    Rusty Souleymanov, Dario Kuzmanović, Zack Marshall, Ayden I. Scheim, Mikiki Mikiki, Catherine Worthington & Margaret Millson (2016). The Ethics of Community-Based Research with People Who Use Drugs: Results of a Scoping Review. BMC Medical Ethics 17 (1):25.
    BackgroundDrug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional ethics review boards. We conducted a scoping review to identify ethical (...)
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  47.  11
    Henri-Corto Stoeklé, Marie-France Mamzer-Bruneel, Guillaume Vogt & Christian Hervé (2016). 23andMe: A New Two-Sided Data-Banking Market Model. BMC Medical Ethics 17 (1):1-11.
    BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...)
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  48.  2
    Margreet Stolper, Bert Molewijk & Guy Widdershoven (2016). Bioethics Education in Clinical Settings: Theory and Practice of the Dilemma Method of Moral Case Deliberation. BMC Medical Ethics 17 (1):45.
    BackgroundMoral Case Deliberation is a specific form of bioethics education fostering professionals’ moral competence in order to deal with their moral questions. So far, few studies focus in detail on Moral Case Deliberation methodologies and their didactic principles. The dilemma method is a structured and frequently used method in Moral Case Deliberation that stimulates methodological reflection and reasoning through a systematic dialogue on an ethical issue experienced in practice.MethodsIn this paper we present a case-study of a Moral Case Deliberation with (...)
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  49.  2
    Michiel Verlinden, Herman Nys, Nadine Ectors & Isabelle Huys (2016). Qualitative Study on Custodianship of Human Biological Material and Data Stored in Biobanks. BMC Medical Ethics 17 (1):1-10.
    BackgroundBalancing the rights and obligations of custodians and applicants in relation to access to biobanks is of utmost importance to guarantee trust and confidence. This study aimed to reveal which issues divide different stakeholders in an attempt to determine the rights and/or obligations held on human biological materials and data.MethodsTwenty-eight informants in the Benelux and Scandinavia were interviewed in order to capture the perspectives of experts and stakeholders in relation to the rights and obligations held by custodians and applicants with (...)
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  50.  6
    Michiel Wesseling, Lode Wigersma & Gerrit van der Wal (2016). Assessment Model for the Justification of Intrusive Lifestyle Interventions: Literature Study, Reasoning and Empirical Testing. BMC Medical Ethics 17 (1):1-8.
    BackgroundIn many countries health insurers, employers and especially governments are increasingly using pressure and coercion to enhance healthier lifestyles. For example by ever higher taxes on cigarettes and alcoholic beverages, and ever stricter smoke-free policies. Such interventions can enhance healthier behaviour, but when they become too intrusive, an unfree society can emerge. Which lifestyle interventions that use pressure or coercion are justifiable and which are not? We tried to develop an assessment model that can be used for answering this question, (...)
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  51.  5
    J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst (2016). Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives. BMC Medical Ethics 17 (1):1.
    The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...)
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  52.  4
    Melvyn W. Zhang, Keith M. Harris & Roger C. Ho (2016). Is Off-Label Repeat Prescription of Ketamine as a Rapid Antidepressant Safe? Controversies, Ethical Concerns, and Legal Implications. BMC Medical Ethics 17 (1):1-8.
    BackgroundDepressive disorders are a common form of psychiatric illness and cause significant disability. Regulation authorities, the medical profession and the public require high safety standards for antidepressants to protect vulnerable psychiatric patients. Ketamine is a dissociative anaesthetic and a derivative of a hallucinogen. Its abuse is a major worldwide public health problem. Ketamine is a scheduled drug and its usage is restricted due to its abuse liability. Recent clinical trials have reported that ketamine use led to rapid antidepressant effects in (...)
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