Year:

  1.  4
    Comparative Effectiveness Research: What to Do When Experts Disagree About Risks.K. Lie Reidar, K. L. Chan Francis, Grady Christine, Ng Vincent & Wendler David - 2017 - BMC Medical Ethics 18 (42).
    Background: Ethical issues related to comparative effectiveness research, or research that compares existing standards of care, have recently received considerable attention. In this paper we focus on how Ethics Review Committees should evaluate the risks of comparative effectiveness research. Main text: We discuss what has been a prominent focus in the debate about comparative effectiveness research, namely that it is justified when “nothing is known” about the comparative effectiveness of the available alternatives. We argue that this focus may be misleading. (...)
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  2. Ethical Issues of Informed Consent in Malaria Research Proposals Submitted to a Research Ethics Committee in Thailand: A Retrospective Document Review.Pornpimon Adams, Sukanya Prakobtham, Chanthima Limpattaracharoen, Sumeth Suebtrakul, Pitchapa Vutikes, Srisin Khusmith, Polrat Wilairatana, Paul Adams & Jaranit Kaewkungwal - 2017 - BMC Medical Ethics 18 (1):50.
    The informed-consent process should be one of meaningful information exchange between researchers and study participants. One of the responsibilities of research ethics committees is to oversee appropriate informed consent. The committee must consider various matters before deciding whether the process is appropriate, including the adequacy and completeness of the written information provided to study participants, and the process of obtaining informed consent. This study aimed to identify, quantitatively and qualitatively, consent-related issues in different types of malaria proposals submitted to the (...)
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  3. Ethical Issues of Informed Consent in Malaria Research Proposals Submitted to a Research Ethics Committee in Thailand: A Retrospective Document Review.Pornpimon Adams, Sukanya Prakobtham, Chanthima Limpattaracharoen, Sumeth Suebtrakul, Pitchapa Vutikes, Srisin Khusmith, Polrat Wilairatana, Paul Adams & Jaranit Kaewkungwal - 2017 - BMC Medical Ethics 18 (1):50.
    BackgroundThe informed-consent process should be one of meaningful information exchange between researchers and study participants. One of the responsibilities of research ethics committees is to oversee appropriate informed consent. The committee must consider various matters before deciding whether the process is appropriate, including the adequacy and completeness of the written information provided to study participants, and the process of obtaining informed consent.This study aimed to identify, quantitatively and qualitatively, consent-related issues in different types of malaria proposals submitted to the Faculty (...)
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  4. Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Alirol Emilie, C. Kuesel Annette, Guraiib Maria Magdalena, de la Fuente-Núñez Vânia, Saxena Abha & F. Gomes Melba - 2017 - BMC Medical Ethics 18 (1):43.
    BackgroundBetween 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies including interventional (...)
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  5.  2
    Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Alirol Emilie, C. Kuesel Annette, Guraiib Maria Magdalena, Fuente-Núñez Vânia Dela, Saxena Abha & F. Gomes Melba - 2017 - BMC Medical Ethics 18 (1):43.
    BackgroundBetween 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies including interventional (...)
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  6. Erratum To: Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Emilie Alirol, Annette C. Kuesel, Maria Magdalena Guraiib, Vânia de la Fuente-Núñez, Abha Saxena & Melba F. Gomes - 2017 - BMC Medical Ethics 18 (1):45.
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  7. Erratum To: Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Emilie Alirol, Annette C. Kuesel, Maria Magdalena Guraiib, Vânia de la Fuente-Núñez, Abha Saxena & Melba F. Gomes - 2017 - BMC Medical Ethics 18 (1):45.
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  8.  1
    Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Emilie Alirol, Annette C. Kuesel, Maria Magdalena Guraiib, Vânia Dela Fuente-Núñez, Abha Saxena & Melba F. Gomes - 2017 - BMC Medical Ethics 18 (1):43.
    Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies including interventional (...)
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  9.  5
    Critical Appraisal of Advance Directives Given by Patients with Fatal Acute Stroke: An Observational Cohort Study.A. Alonso, D. Dörr & K. Szabo - 2017 - BMC Medical Ethics 18 (1):7.
    BackgroundAdvance directives imply the promise of determining future medical treatment in case of decisional incapacity. However, clinical practice increasingly indicates that standardized ADs often fail to support patients’ autonomy. To date, little data are available about the quality and impact of ADs on end-of-life decisions for incapacitated acute stroke patients.MethodsWe analyzed the ADs of patients with fatal stroke, focusing on: their availability and type, stated circumstances to which the AD should apply, and stated wishes regarding specific treatment options.ResultsBetween 2011 and (...)
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  10.  1
    The Intention to Disclose Medical Errors Among Doctors in a Referral Hospital in North Malaysia.H. S. Arvinder-Singh & Rashid Abdul - 2017 - BMC Medical Ethics 18 (1):3.
    BackgroundIn this study, medical errors are defined as unintentional patient harm caused by a doctor’s mistake. This topic, due to limited research, is poorly understood in Malaysia. The objective of this study was to determine the proportion of doctors intending to disclose medical errors, and their attitudes/perception pertaining to medical errors.MethodsThis cross-sectional study was conducted at a tertiary public hospital from July- December 2015 among 276 randomly selected doctors. Data was collected using a standardized and validated self-administered questionnaire intending to (...)
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  11. Donation After Brain Circulation Determination of Death.Anne L. Dalle Ave & James L. Bernat - 2017 - BMC Medical Ethics 18 (1):15.
    BackgroundThe fundamental determinant of death in donation after circulatory determination of death is the cessation of brain circulation and function. We therefore propose the term donation after brain circulation determination of death [DBCDD].ResultsIn DBCDD, death is determined when the cessation of circulatory function is permanent but before it is irreversible, consistent with medical standards of death determination outside the context of organ donation. Safeguards to prevent error include that: 1] the possibility of auto-resuscitation has elapsed; 2] no brain circulation may (...)
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  12.  1
    Donation After Brain Circulation Determination of Death.Anne L. Dalle Ave & James L. Bernat - 2017 - BMC Medical Ethics 18 (1):15.
    The fundamental determinant of death in donation after circulatory determination of death is the cessation of brain circulation and function. We therefore propose the term donation after brain circulation determination of death [DBCDD]. In DBCDD, death is determined when the cessation of circulatory function is permanent but before it is irreversible, consistent with medical standards of death determination outside the context of organ donation. Safeguards to prevent error include that: 1] the possibility of auto-resuscitation has elapsed; 2] no brain circulation (...)
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  13.  4
    Self-Tests for Influenza: An Empirical Ethics Investigation.Benedict Rumbold, Clare Wenham & James Wilson - 2017 - BMC Medical Ethics 18 (1):33.
    In this article we aim to assess the ethical desirability of self-test diagnostic kits for influenza, focusing in particular on the potential benefits and challenges posed by a new, mobile phone-based tool currently being developed by i-sense, an interdisciplinary research collaboration based at University College London and funded by the Engineering and Physical Sciences Research Council. Our study adopts an empirical ethics approach, supplementing an initial review into the ethical considerations posed by such technologies with qualitative data from three focus (...)
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  14. Presumed Consent: Licenses and Limits Inferred From the Case of Geriatric Hip Fractures.Joseph Bernstein, Drake LeBrun, Duncan MacCourt & Jaimo Ahn - 2017 - BMC Medical Ethics 18 (1):17.
    Hip fractures are common and serious injuries in the geriatric population. Obtaining informed consent for surgery in geriatric patients can be difficult due to the high prevalence of comorbid cognitive impairment. Given that virtually all patients with hip fractures eventually undergo surgery, and given that delays in surgery are associated with increased mortality, we argue that there are select instances in which it may be ethically permissible, and indeed clinically preferable, to initiate surgical treatment in cognitively impaired patients under the (...)
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  15.  1
    Presumed Consent: Licenses and Limits Inferred From the Case of Geriatric Hip Fractures.Joseph Bernstein, Drake LeBrun, Duncan MacCourt & Jaimo Ahn - 2017 - BMC Medical Ethics 18 (1):17.
    BackgroundHip fractures are common and serious injuries in the geriatric population. Obtaining informed consent for surgery in geriatric patients can be difficult due to the high prevalence of comorbid cognitive impairment. Given that virtually all patients with hip fractures eventually undergo surgery, and given that delays in surgery are associated with increased mortality, we argue that there are select instances in which it may be ethically permissible, and indeed clinically preferable, to initiate surgical treatment in cognitively impaired patients under the (...)
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  16.  2
    Smart Homes, Private Homes? An Empirical Study of Technology Researchers’ Perceptions of Ethical Issues in Developing Smart-Home Health Technologies.Giles Birchley, Richard Huxtable, Madeleine Murtagh, Ruud ter Meulen, Peter Flach & Rachael Gooberman-Hill - 2017 - BMC Medical Ethics 18 (1):23.
    BackgroundSmart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...)
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  17. Smart Homes, Private Homes? An Empirical Study of Technology Researchers’ Perceptions of Ethical Issues in Developing Smart-Home Health Technologies.Giles Birchley, Richard Huxtable, Madeleine Murtagh, Ruud ter Meulen, Peter Flach & Rachael Gooberman-Hill - 2017 - BMC Medical Ethics 18 (1):23.
    Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...)
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  18.  3
    Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
    BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...)
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  19.  2
    Ethical Framework for the Detection, Management and Communication of Incidental Findings in Imaging Studies, Building on an Interview Study of Researchers’ Practices and Perspectives.Eline M. Bunnik, Lisa van Bodegom, Wim Pinxten, Inez D. De Beaufort & Meike W. Vernooij - 2017 - BMC Medical Ethics 18 (1):10.
    BackgroundAs thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...)
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  20.  1
    Ethical Framework for the Detection, Management and Communication of Incidental Findings in Imaging Studies, Building on an Interview Study of Researchers’ Practices and Perspectives.Eline M. Bunnik, Lisa van Bodegom, Wim Pinxten, Inez D. De Beaufort & Meike W. Vernooij - 2017 - BMC Medical Ethics 18 (1):10.
    As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...)
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  21.  1
    On Classifying the Field of Medical Ethics.Kristine Bærøe, Jonathan Ives, Martine de Vries & Jan Schildmann - 2017 - BMC Medical Ethics 18 (1):30.
    In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...)
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  22.  3
    On Classifying the Field of Medical Ethics.Kristine Bærøe, Jonathan Ives, Martine de Vries & Jan Schildmann - 2017 - BMC Medical Ethics 18 (1):30.
    In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would give structure to the journal help ensure that authors’ research is matched to the most appropriate editors and help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying (...)
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  23.  3
    A 14-Day Limit for Bioethics: The Debate Over Human Embryo Research.Cavaliere Giulia - 2017 - BMC Medical Ethics 18 (1):38.
    BackgroundThis article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies, scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until (...)
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  24.  1
    Navigating Social and Ethical Challenges of Biobanking for Human Microbiome Research.H. Chuong Kim, M. Hwang David, Tullis D. Elizabeth, J. Waters Valerie, C. W. Yau Yvonne, S. Guttman David & C. O’Doherty Kieran - 2017 - BMC Medical Ethics 18 (1):1.
    BackgroundBiobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications. While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate.DiscussionWe draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs (...)
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  25.  3
    Regulation of Genomic and Biobanking Research in Africa: A Content Analysis of Ethics Guidelines, Policies and Procedures From 22 African Countries.de Vries Jantina, Munung Syntia Nchangwi, Matimba Alice, McCurdy Sheryl, Oukem-Boyer Odile Ouwe Missi, Staunton Ciara, Yakubu Aminu, Tindana Paulina & Consortium the H3Africa - 2017 - BMC Medical Ethics 18 (1):8.
    The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...)
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  26.  1
    Regulation of Genomic and Biobanking Research in Africa: A Content Analysis of Ethics Guidelines, Policies and Procedures From 22 African Countries.de Vries Jantina, Munung Syntia Nchangwi, Matimba Alice, McCurdy Sheryl, Oukem-Boyer Odile Ouwe Missi, Staunton Ciara, Yakubu Aminu, Tindana Paulina & Consortium the H3Africa - 2017 - BMC Medical Ethics 18 (1):8.
    BackgroundThe introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...)
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  27.  2
    How Do Ethnic Minority Patients Experience the Intercultural Care Encounter in Hospitals? A Systematic Review of Qualitative Research.Liesbet Degrie, Chris Gastmans, Lieslot Mahieu, Bernadette Dierckx de Casterlé & Yvonne Denier - 2017 - BMC Medical Ethics 18 (1):2.
    BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers published (...)
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  28.  1
    A Qualitative Study of Participants’ Views on Re-Consent in a Longitudinal Biobank.Mary Dixon-Woods, David Kocman, Liz Brewster, Janet Willars, Graeme Laurie & Carolyn Tarrant - 2017 - BMC Medical Ethics 18 (1):22.
    BackgroundBiomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or “biobanks” over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank.MethodsWe conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank. Their views were elicited using a semi-structured interview schedule and scenarios based on (...)
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  29. A Qualitative Study of Participants’ Views on Re-Consent in a Longitudinal Biobank.Mary Dixon-Woods, David Kocman, Liz Brewster, Janet Willars, Graeme Laurie & Carolyn Tarrant - 2017 - BMC Medical Ethics 18 (1):22.
    Biomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or “biobanks” over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank. We conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank. Their views were elicited using a semi-structured interview schedule and scenarios based (...)
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  30.  1
    A Qualitative Study on Acceptable Levels of Risk for Pregnant Women in Clinical Research.Indira S. E. Van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. Van Delden - 2017 - BMC Medical Ethics 18 (1):35.
    BackgroundThere is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as (...)
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  31. A Qualitative Study on Acceptable Levels of Risk for Pregnant Women in Clinical Research.Indira S. E. Van der Zande, Rieke van der Graaf, Martijn A. Oudijk & Johannes J. M. Van Delden - 2017 - BMC Medical Ethics 18 (1):35.
    There is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as (...)
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  32.  1
    Ethics Review of Studies During Public Health Emergencies - the Experience of the WHO Ethics Review Committee During the Ebola Virus Disease Epidemic.Emilie Alirol, C. Kuesel Annette, Magdalena Guraiib Maria, Vânia de la Fuente-Núñez, Abha Saxena & F. Gomes Melba - 2017 - BMC Medical Ethics 18 (1):43.
    Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies including interventional (...)
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  33.  5
    Implicit Bias in Healthcare Professionals: A Systematic Review.Chloë FitzGerald & Samia Hurst - 2017 - BMC Medical Ethics 18 (1):19.
    Implicit biases involve associations outside conscious awareness that lead to a negative evaluation of a person on the basis of irrelevant characteristics such as race or gender. This review examines the evidence that healthcare professionals display implicit biases towards patients. PubMed, PsychINFO, PsychARTICLE and CINAHL were searched for peer-reviewed articles published between 1st March 2003 and 31st March 2013. Two reviewers assessed the eligibility of the identified papers based on precise content and quality criteria. The references of eligible papers were (...)
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  34.  3
    Implicit Bias in Healthcare Professionals: A Systematic Review.Chloë FitzGerald & Samia Hurst - 2017 - BMC Medical Ethics 18 (1):19.
    BackgroundImplicit biases involve associations outside conscious awareness that lead to a negative evaluation of a person on the basis of irrelevant characteristics such as race or gender. This review examines the evidence that healthcare professionals display implicit biases towards patients.MethodsPubMed, PsychINFO, PsychARTICLE and CINAHL were searched for peer-reviewed articles published between 1st March 2003 and 31st March 2013. Two reviewers assessed the eligibility of the identified papers based on precise content and quality criteria. The references of eligible papers were examined (...)
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  35. The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia.E. F. M. Fitzpatrick, G. Macdonald, A. L. C. Martiniuk, H. D’Antoine, J. Oscar, M. Carter, T. Lawford & E. J. Elliott - 2017 - BMC Medical Ethics 18 (1):34.
    BackgroundResearchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings.MethodsThe Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people were (...)
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  36. The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia.E. F. M. Fitzpatrick, G. Macdonald, A. L. C. Martiniuk, H. D’Antoine, J. Oscar, M. Carter, T. Lawford & E. J. Elliott - 2017 - BMC Medical Ethics 18 (1):34.
    Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people (...)
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  37. Principle-Based Structured Case Discussions: Do They Foster Moral Competence in Medical Students? - A Pilot Study.Orsolya Friedrich, Kay Hemmerling, Katja Kuehlmeyer, Stefanie Nörtemann, Martin Fischer & Georg Marckmann - 2017 - BMC Medical Ethics 18 (1):21.
    Recent findings suggest that medical students’ moral competence decreases throughout medical school. This pilot study gives preliminary insights into the effects of two educational interventions in ethics classes on moral competence among medical students in Munich, Germany. Between 2012 and 2013, medical students were tested using Lind’s Moral Competence Test prior to and after completing different ethics classes. The experimental group participated in principle-based structured case discussions and was compared with a control group with theory-based case discussions. The pre/post C-scores (...)
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  38.  1
    Principle-Based Structured Case Discussions: Do They Foster Moral Competence in Medical Students? - A Pilot Study.Orsolya Friedrich, Kay Hemmerling, Katja Kuehlmeyer, Stefanie Nörtemann, Martin Fischer & Georg Marckmann - 2017 - BMC Medical Ethics 18 (1):21.
    BackgroundRecent findings suggest that medical students’ moral competence decreases throughout medical school. This pilot study gives preliminary insights into the effects of two educational interventions in ethics classes on moral competence among medical students in Munich, Germany.MethodsBetween 2012 and 2013, medical students were tested using Lind’s Moral Competence Test prior to and after completing different ethics classes. The experimental group participated in principle-based structured case discussions and was compared with a control group with theory-based case discussions. The pre/post C-scores were (...)
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  39.  2
    A 14-Day Limit for Bioethics: The Debate Over Human Embryo Research.Giulia Cavaliere - 2017 - BMC Medical Ethics 18 (1):38.
    This article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies, scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until (...)
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  40. The Elusive Ideal of Inclusiveness: Lessons From a Worldwide Survey of Neurologists on the Ethical Issues Raised by Whole-Genome Sequencing.Thierry Hurlimann, Iris Jaitovich Groisman & Béatrice Godard - 2017 - BMC Medical Ethics 18 (1):28.
    The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders’ perspectives on the use of such technologies. Within the framework of a research project entitled “Personalized medicine in the treatment of epilepsy”, we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists (...)
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  41. The Elusive Ideal of Inclusiveness: Lessons From a Worldwide Survey of Neurologists on the Ethical Issues Raised by Whole-Genome Sequencing.Thierry Hurlimann, Iris Jaitovich Groisman & Béatrice Godard - 2017 - BMC Medical Ethics 18 (1):28.
    The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders’ perspectives on the use of such technologies. Within the framework of a research project entitled “Personalized medicine in the treatment of epilepsy”, we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists (...)
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  42. Erratum To: The Liverpool Care Pathway: Discarded in Cancer Patients but Good Enough for Dying Nursing Home Patients? A Systematic Review.S. Husebo Bettina, Flo Elisabeth & Engedal Knut - 2017 - BMC Medical Ethics 18 (1):52.
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  43. The Liverpool Care Pathway: Discarded in Cancer Patients but Good Enough for Dying Nursing Home Patients? A Systematic Review.S. Husebø Bettina, Elisabeth Flo & Knut Engedal - 2017 - BMC Medical Ethics 18 (1):48.
    The Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for dying (...)
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  44. The Liverpool Care Pathway: Discarded in Cancer Patients but Good Enough for Dying Nursing Home Patients? A Systematic Review.S. Husebø Bettina, Flo Elisabeth & Engedal Knut - 2017 - BMC Medical Ethics 18 (1):48.
    BackgroundThe Liverpool Care Pathway is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for dying (...)
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  45.  1
    Measuring Value Sensitivity in Medicine.Christian Ineichen, Markus Christen & Carmen Tanner - 2017 - BMC Medical Ethics 18 (1):5.
    BackgroundValue sensitivity – the ability to recognize value-related issues when they arise in practice – is an indispensable competence for medical practitioners to enter decision-making processes related to ethical questions. However, the psychological competence of value sensitivity is seldom an explicit subject in the training of medical professionals. In this contribution, we outline the traditional concept of moral sensitivity in medicine and its revised form conceptualized as value sensitivity and we propose an instrument that measures value sensitivity.MethodsWe developed an instrument (...)
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  46.  1
    Pre- and Post-Testing Counseling Considerations for the Provision of Expanded Carrier Screening: Exploration of European Geneticists’ Views.Sandra Janssens, Davit Chokoshvili, Danya F. Vears, Anne De Paepe & Pascal Borry - 2017 - BMC Medical Ethics 18 (1):46.
    BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and molecular (...)
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  47.  1
    Clinical Ethics Issues in HIV Care in Canada: An Institutional Ethnographic Study.Chris Kaposy, Nicole R. Greenspan, Zack Marshall, Jill Allison, Shelley Marshall & Cynthia Kitson - 2017 - BMC Medical Ethics 18 (1):9.
    BackgroundThis is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups.MethodsWe used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical issues (...)
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  48. Clinical Ethics Issues in HIV Care in Canada: An Institutional Ethnographic Study.Chris Kaposy, Nicole R. Greenspan, Zack Marshall, Jill Allison, Shelley Marshall & Cynthia Kitson - 2017 - BMC Medical Ethics 18 (1):9.
    This is a study involving three HIV clinics in the Canadian provinces of Newfoundland and Labrador, and Manitoba. We sought to identify ethical issues involving health care providers and clinic clients in these settings, and to gain an understanding of how different ethical issues are managed by these groups. We used an institutional ethnographic method to investigate ethical issues in HIV clinics. Our researcher conducted in-depth semi-structured interviews, compiled participant observation notes, and studied health records in order to document ethical (...)
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  49.  1
    Factors Affecting Willingness to Share Electronic Health Data Among California Consumers.Katherine K. Kim, Pamela Sankar, Machelle D. Wilson & Sarah C. Haynes - 2017 - BMC Medical Ethics 18 (1):25.
    Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research. (...)
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  50. Factors Affecting Willingness to Share Electronic Health Data Among California Consumers.Katherine K. Kim, Pamela Sankar, Machelle D. Wilson & Sarah C. Haynes - 2017 - BMC Medical Ethics 18 (1):25.
    BackgroundRobust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research.MethodsThis (...)
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  51. Unconventional Combinations of Prospective Parents: Ethical Challenges Faced by IVF Providers.Klitzman Robert - 2017 - BMC Medical Ethics 18 (1):18.
    BackgroundProfessional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements, but many questions arise regarding how providers view and make decisions about these and other such arrangements.MethodsThirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed.ResultsProviders faced a range of challenges and ethical dilemmas concerning both the content and the process of decisions about requests for unconventional interfamilial and other reproductive combinations. Providers vary in how they respond (...)
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  52. Written Versus Verbal Consent: A Qualitative Study of Stakeholder Views of Consent Procedures Used at the Time of Recruitment Into a Peripartum Trial Conducted in an Emergency Setting.J. Lawton, N. Hallowell, C. Snowdon, J. E. Norman, K. Carruthers & F. C. Denison - 2017 - BMC Medical Ethics 18 (1):36.
    BackgroundObtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women’s and staff views about the consent procedures used during the internal pilot of a trial, where the protocol permitted staff to gain verbal consent at recruitment.MethodsInterviews with staff and (...)
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  53. Written Versus Verbal Consent: A Qualitative Study of Stakeholder Views of Consent Procedures Used at the Time of Recruitment Into a Peripartum Trial Conducted in an Emergency Setting.J. Lawton, N. Hallowell, C. Snowdon, J. E. Norman, K. Carruthers & F. C. Denison - 2017 - BMC Medical Ethics 18 (1):36.
    Obtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women’s and staff views about the consent procedures used during the internal pilot of a trial, where the protocol permitted staff to gain verbal consent at recruitment. Interviews with staff (...)
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  54. Comparative Effectiveness Research: What to Do When Experts Disagree About Risks.K. Lie Reidar, K. L. Chan Francis, Christine Grady, H. Ng Vincent & David Wendler - 2017 - BMC Medical Ethics 18 (1):42.
    Ethical issues related to comparative effectiveness research, or research that compares existing standards of care, have recently received considerable attention. In this paper we focus on how Ethics Review Committees should evaluate the risks of comparative effectiveness research. We discuss what has been a prominent focus in the debate about comparative effectiveness research, namely that it is justified when “nothing is known” about the comparative effectiveness of the available alternatives. We argue that this focus may be misleading. Rather, we should (...)
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  55. Comparative Effectiveness Research: What to Do When Experts Disagree About Risks.K. Lie Reidar, K. L. Chan Francis, Grady Christine, H. Ng Vincent & Wendler David - 2017 - BMC Medical Ethics 18 (1):42.
    BackgroundEthical issues related to comparative effectiveness research, or research that compares existing standards of care, have recently received considerable attention. In this paper we focus on how Ethics Review Committees should evaluate the risks of comparative effectiveness research.Main textWe discuss what has been a prominent focus in the debate about comparative effectiveness research, namely that it is justified when “nothing is known” about the comparative effectiveness of the available alternatives. We argue that this focus may be misleading. Rather, we should (...)
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  56. How Chinese Clinicians Face Ethical and Social Challenges in Fecal Microbiota Transplantation: A Questionnaire Study.Yonghui Ma, Jinqiu Yang, Bota Cui, Hongzhi Xu, Chuanxing Xiao & Faming Zhang - 2017 - BMC Medical Ethics 18 (1):39.
    BackgroundFecal microbiota transplantation is reportedly the most effective therapy for relapsing Clostridium Difficile infection and a potential therapeutic option for many diseases. It also poses important ethical concerns. This study is an attempt to assess clinicians’ perception and attitudes towards ethical and social challenges raised by fecal microbiota transplantation.MethodsA questionnaire was developed which consisted of 20 items: four items covered general aspects, nine were about ethical aspects such as informed consent and privacy issues, four concerned social and regulatory issues, and (...)
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  57. How Chinese Clinicians Face Ethical and Social Challenges in Fecal Microbiota Transplantation: A Questionnaire Study.Yonghui Ma, Jinqiu Yang, Bota Cui, Hongzhi Xu, Chuanxing Xiao & Faming Zhang - 2017 - BMC Medical Ethics 18 (1):39.
    Fecal microbiota transplantation is reportedly the most effective therapy for relapsing Clostridium Difficile infection and a potential therapeutic option for many diseases. It also poses important ethical concerns. This study is an attempt to assess clinicians’ perception and attitudes towards ethical and social challenges raised by fecal microbiota transplantation. A questionnaire was developed which consisted of 20 items: four items covered general aspects, nine were about ethical aspects such as informed consent and privacy issues, four concerned social and regulatory issues, (...)
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  58.  1
    Core Information Sets for Informed Consent to Surgical Interventions: Baseline Information of Importance to Patients and Clinicians.Barry G. Main, Angus G. K. McNair, Richard Huxtable, Jenny L. Donovan, Steven J. Thomas, Paul Kinnersley & Jane M. Blazeby - 2017 - BMC Medical Ethics 18 (1):29.
    Consent remains a crucial, yet challenging, cornerstone of clinical practice. The ethical, legal and professional understandings of this construct have evolved away from a doctor-centred act to a patient-centred process that encompasses the patient’s values, beliefs and goals. This alignment of consent with the philosophy of shared decision-making was affirmed in a recent high-profile Supreme Court ruling in England. The communication of information is central to this model of health care delivery but it can be difficult for doctors to gauge (...)
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  59.  1
    Core Information Sets for Informed Consent to Surgical Interventions: Baseline Information of Importance to Patients and Clinicians.Barry G. Main, Angus G. K. McNair, Richard Huxtable, Jenny L. Donovan, Steven J. Thomas, Paul Kinnersley & Jane M. Blazeby - 2017 - BMC Medical Ethics 18 (1):29.
    BackgroundConsent remains a crucial, yet challenging, cornerstone of clinical practice. The ethical, legal and professional understandings of this construct have evolved away from a doctor-centred act to a patient-centred process that encompasses the patient’s values, beliefs and goals. This alignment of consent with the philosophy of shared decision-making was affirmed in a recent high-profile Supreme Court ruling in England. The communication of information is central to this model of health care delivery but it can be difficult for doctors to gauge (...)
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  60. Does Growing Up with a Physician Influence the Ethics of Medical Students’ Relationships with the Pharmaceutical Industry? The Cases of the US and Poland.Marta Makowska - 2017 - BMC Medical Ethics 18 (1):49.
    BackgroundMedical schools have a major impact on future doctors’ ethics and their attitudes towards cooperation with the pharmaceutical industry. From childhood, medical students who are related to a physician are exposed to the characteristics of a medical career and learn its professional ethics not only in school but also in the family setting. The present paper sought to answer the research question: ‘How does growing up with a physician influence medical students' perceptions of conflicts of interest in their relationships with (...)
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  61. Does Growing Up with a Physician Influence the Ethics of Medical Students’ Relationships with the Pharmaceutical Industry? The Cases of the US and Poland.Marta Makowska - 2017 - BMC Medical Ethics 18 (1):49.
    Medical schools have a major impact on future doctors’ ethics and their attitudes towards cooperation with the pharmaceutical industry. From childhood, medical students who are related to a physician are exposed to the characteristics of a medical career and learn its professional ethics not only in school but also in the family setting. The present paper sought to answer the research question: ‘How does growing up with a physician influence medical students' perceptions of conflicts of interest in their relationships with (...)
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  62. “I Passed the Test!” Evidence of Diagnostic Misconception in the Recruitment of Population Controls for an H3Africa Genomic Study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
    BackgroundAdvances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...)
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  63. “I Passed the Test!” Evidence of Diagnostic Misconception in the Recruitment of Population Controls for an H3Africa Genomic Study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
    Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...)
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  64. Assessment of Knowledge About Biobanking Among Healthcare Students and Their Willingness to Donate Biospecimens.Leena Merdad, Lama Aldakhil, Rawan Gadi, Mourad Assidi, Salina Y. Saddick, Adel Abuzenadah, Jim Vaught, Abdelbaset Buhmeida & Mohammed H. Al-Qahtani - 2017 - BMC Medical Ethics 18 (1):32.
    Biobanks and biospecimen collections are becoming a primary means of delivering personalized diagnostics and tailoring individualized therapeutics. This shift towards precision medicine requires interactions among a variety of stakeholders, including the public, patients, healthcare providers, government, and donors. Very few studies have investigated the role of healthcare students in biobanking and biospecimen donations. The main aims of this study were to evaluate the knowledge of senior healthcare students about biobanks and to assess the students’ willingness to donate biospecimens and the (...)
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  65.  1
    Assessment of Knowledge About Biobanking Among Healthcare Students and Their Willingness to Donate Biospecimens.Leena Merdad, Lama Aldakhil, Rawan Gadi, Mourad Assidi, Salina Y. Saddick, Adel Abuzenadah, Jim Vaught, Abdelbaset Buhmeida & Mohammed H. Al-Qahtani - 2017 - BMC Medical Ethics 18 (1):32.
    BackgroundBiobanks and biospecimen collections are becoming a primary means of delivering personalized diagnostics and tailoring individualized therapeutics. This shift towards precision medicine requires interactions among a variety of stakeholders, including the public, patients, healthcare providers, government, and donors. Very few studies have investigated the role of healthcare students in biobanking and biospecimen donations. The main aims of this study were to evaluate the knowledge of senior healthcare students about biobanks and to assess the students’ willingness to donate biospecimens and the (...)
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  66.  1
    How to Introduce Medical Ethics at the Bedside - Factors Influencing the Implementation of an Ethical Decision-Making Model.Barbara Meyer-Zehnder, Heidi Albisser Schleger, Sabine Tanner, Valentin Schnurrer, Deborah R. Vogt, Stella Reiter-Theil & Hans Pargger - 2017 - BMC Medical Ethics 18 (1):16.
    As the implementation of new approaches and procedures of medical ethics is as complex and resource-consuming as in other fields, strategies and activities must be carefully planned to use the available means and funds responsibly. Which facilitators and barriers influence the implementation of a medical ethics decision-making model in daily routine? Up to now, there has been little examination of these factors in this field. A medical ethics decision-making model called METAP was introduced on three intensive care units and two (...)
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  67.  1
    How to Introduce Medical Ethics at the Bedside - Factors Influencing the Implementation of an Ethical Decision-Making Model.Barbara Meyer-Zehnder, Heidi Albisser Schleger, Sabine Tanner, Valentin Schnurrer, Deborah R. Vogt, Stella Reiter-Theil & Hans Pargger - 2017 - BMC Medical Ethics 18 (1):16.
    BackgroundAs the implementation of new approaches and procedures of medical ethics is as complex and resource-consuming as in other fields, strategies and activities must be carefully planned to use the available means and funds responsibly. Which facilitators and barriers influence the implementation of a medical ethics decision-making model in daily routine? Up to now, there has been little examination of these factors in this field.MethodsA medical ethics decision-making model called METAP was introduced on three intensive care units and two geriatric (...)
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  68. Staff’s Normative Attitudes Towards Coercion: The Role of Moral Doubt and Professional Context—a Cross-Sectional Survey Study.Bert Molewijk, Almar Kok, Tonje Husum, Reidar Pedersen & Olaf Aasland - 2017 - BMC Medical Ethics 18 (1):37.
    The use of coercion is morally problematic and requires an ongoing critical reflection. We wondered if not knowing or being uncertain whether coercion is morally right or justified is related to professionals’ normative attitudes regarding the use of coercion. This paper describes an explorative statistical analysis based on a cross-sectional survey across seven wards in three Norwegian mental health care institutions. Descriptive analyses showed that in general the 379 respondents a) were not so sure whether coercion should be seen as (...)
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  69. Staff’s Normative Attitudes Towards Coercion: The Role of Moral Doubt and Professional Context—a Cross-Sectional Survey Study.Bert Molewijk, Almar Kok, Tonje Husum, Reidar Pedersen & Olaf Aasland - 2017 - BMC Medical Ethics 18 (1):37.
    BackgroundThe use of coercion is morally problematic and requires an ongoing critical reflection. We wondered if not knowing or being uncertain whether coercion is morally right or justified is related to professionals’ normative attitudes regarding the use of coercion.MethodsThis paper describes an explorative statistical analysis based on a cross-sectional survey across seven wards in three Norwegian mental health care institutions.ResultsDescriptive analyses showed that in general the 379 respondents a) were not so sure whether coercion should be seen as offending, b) (...)
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  70. The ECOUTER Methodology for Stakeholder Engagement in Translational Research.Madeleine J. Murtagh, Joel T. Minion, Andrew Turner, Rebecca C. Wilson, Mwenza Blell, Cynthia Ochieng, Barnaby Murtagh, Stephanie Roberts, Oliver W. Butters & Paul R. Burton - 2017 - BMC Medical Ethics 18 (1):24.
    BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...)
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  71. The ECOUTER Methodology for Stakeholder Engagement in Translational Research.Madeleine J. Murtagh, Joel T. Minion, Andrew Turner, Rebecca C. Wilson, Mwenza Blell, Cynthia Ochieng, Barnaby Murtagh, Stephanie Roberts, Oliver W. Butters & Paul R. Burton - 2017 - BMC Medical Ethics 18 (1):24.
    Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...)
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  72. Healthcare Professionals’ and Patients’ Perspectives on Consent to Clinical Genetic Testing: Moving Towards a More Relational Approach.Samuel Gabrielle Natalie, Dheensa Sandi, Farsides Bobbie, Fenwick Angela & Lucassen Anneke - 2017 - BMC Medical Ethics 18 (1):47.
    This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...)
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  73. Fair is Fair: We Must Re-Allocate Livers for Transplant.Brendan Parent & Arthur L. Caplan - 2017 - BMC Medical Ethics 18 (1):26.
    The 11 original regions for organ allocation in the United States were determined by proximity between hospitals that provided deceased donors and transplant programs. As liver transplants became more successful and demand rose, livers became a scarce resource. A national system has been implemented to prioritize liver allocation according to disease severity, but the system still operates within the original procurement regions, some of which have significantly more deceased donor livers. Although each region prioritizes its sickest patients to be liver (...)
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  74.  1
    Fair is Fair: We Must Re-Allocate Livers for Transplant.Brendan Parent & Arthur L. Caplan - 2017 - BMC Medical Ethics 18 (1):26.
    The 11 original regions for organ allocation in the United States were determined by proximity between hospitals that provided deceased donors and transplant programs. As liver transplants became more successful and demand rose, livers became a scarce resource. A national system has been implemented to prioritize liver allocation according to disease severity, but the system still operates within the original procurement regions, some of which have significantly more deceased donor livers. Although each region prioritizes its sickest patients to be liver (...)
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  75. Human Rights Violations in Organ Procurement Practice in China.Norbert W. Paul, Arthur Caplan, Michael E. Shapiro, Charl Els, Kirk C. Allison & Huige Li - 2017 - BMC Medical Ethics 18 (1):11.
    BackgroundOver 90% of the organs transplanted in China before 2010 were procured from prisoners. Although Chinese officials announced in December 2014 that the country would completely cease using organs harvested from prisoners, no regulatory adjustments or changes in China’s organ donation laws followed. As a result, the use of prisoner organs remains legal in China if consent is obtained.DiscussionWe have collected and analysed available evidence on human rights violations in the organ procurement practice in China. We demonstrate that the practice (...)
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  76. Human Rights Violations in Organ Procurement Practice in China.Norbert W. Paul, Arthur Caplan, Michael E. Shapiro, Charl Els, Kirk C. Allison & Huige Li - 2017 - BMC Medical Ethics 18 (1):11.
    Over 90% of the organs transplanted in China before 2010 were procured from prisoners. Although Chinese officials announced in December 2014 that the country would completely cease using organs harvested from prisoners, no regulatory adjustments or changes in China’s organ donation laws followed. As a result, the use of prisoner organs remains legal in China if consent is obtained. We have collected and analysed available evidence on human rights violations in the organ procurement practice in China. We demonstrate that the (...)
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  77. Are Advance Directives Helpful for Good End of Life Decision Making: A Cross Sectional Survey of Health Professionals.Eimantas Peicius, Aurelija Blazeviciene & Raimondas Kaminskas - 2017 - BMC Medical Ethics 18 (1):40.
    BackgroundThis paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine health professionals’ (...)
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  78. Are Advance Directives Helpful for Good End of Life Decision Making: A Cross Sectional Survey of Health Professionals.Eimantas Peicius, Aurelija Blazeviciene & Raimondas Kaminskas - 2017 - BMC Medical Ethics 18 (1):40.
    This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine health professionals’ (...)
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  79.  2
    Informed Consent and Registry-Based Research - the Case of the Danish Circumcision Registry.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):53.
    BackgroundResearch into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...)
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  80. Eliciting Meta Consent for Future Secondary Research Use of Health Data Using a Smartphone Application - a Proof of Concept Study in the Danish Population.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):51.
    The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent (...)
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  81.  1
    Eliciting Meta Consent for Future Secondary Research Use of Health Data Using a Smartphone Application - a Proof of Concept Study in the Danish Population.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):51.
    BackgroundThe increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent (...)
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  82.  3
    Informed Consent and Registry-Based Research - the Case of the Danish Circumcision Registry.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):53.
    Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...)
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  83. Informed Consent and Registry-Based Research - the Case of the Danish Circumcision Registry.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):53.
    Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...)
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  84. The Importance of Professional Values From Clinical Nurses’ Perspective in Hospitals of a Medical University in Iran.Batool Poorchangizi, Jamileh Farokhzadian, Abbas Abbaszadeh, Moghaddameh Mirzaee & Fariba Borhani - 2017 - BMC Medical Ethics 18 (1):20.
    Today, nurses are required to have knowledge and awareness concerning professional values as standards to provide safe and high-quality ethical care. Nurses’ perspective on professional values affects decision-making and patient care. Therefore, the present study aimed to investigate the importance of professional values from clinical nurses’ perspective. The present cross-sectional study was conducted in 2016 in four educational hospitals of Kerman University of Medical Sciences, Iran. Data were collected via the Persian version of Nursing Professional Values Scale-Revised by Weis and (...)
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  85. The Importance of Professional Values From Clinical Nurses’ Perspective in Hospitals of a Medical University in Iran.Batool Poorchangizi, Jamileh Farokhzadian, Abbas Abbaszadeh, Moghaddameh Mirzaee & Fariba Borhani - 2017 - BMC Medical Ethics 18 (1):20.
    BackgroundToday, nurses are required to have knowledge and awareness concerning professional values as standards to provide safe and high-quality ethical care. Nurses’ perspective on professional values affects decision-making and patient care. Therefore, the present study aimed to investigate the importance of professional values from clinical nurses’ perspective.MethodsThe present cross-sectional study was conducted in 2016 in four educational hospitals of Kerman University of Medical Sciences, Iran. Data were collected via the Persian version of Nursing Professional Values Scale-Revised by Weis and Schank. (...)
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  86. Unconventional Combinations of Prospective Parents: Ethical Challenges Faced by IVF Providers.Klitzman Robert - 2017 - BMC Medical Ethics 18 (1):18.
    Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements, but many questions arise regarding how providers view and make decisions about these and other such arrangements. Thirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed. Providers faced a range of challenges and ethical dilemmas concerning both the content and the process of decisions about requests for unconventional interfamilial and other reproductive combinations. Providers vary in how (...)
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  87.  1
    Self-Tests for Influenza: An Empirical Ethics Investigation.Rumbold Benedict, Wenham Clare & Wilson James - 2017 - BMC Medical Ethics 18 (1):33.
    BackgroundIn this article we aim to assess the ethical desirability of self-test diagnostic kits for influenza, focusing in particular on the potential benefits and challenges posed by a new, mobile phone-based tool currently being developed by i-sense, an interdisciplinary research collaboration based at University College London and funded by the Engineering and Physical Sciences Research Council.MethodsOur study adopts an empirical ethics approach, supplementing an initial review into the ethical considerations posed by such technologies with qualitative data from three focus groups.ResultsOverall, (...)
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  88.  1
    A Critique of the Regulation of Data Science in Healthcare Research in the European Union.M. M. Rumbold John & K. Pierscionek Barbara - 2017 - BMC Medical Ethics 18 (1):27.
    The EU offers a suitable milieu for the comparison and harmonisation of healthcare across different languages, cultures, and jurisdictions, which could provide improvements in healthcare standards across the bloc. There are specific ethico-legal issues with the use of data in healthcare research that mandate a different approach from other forms of research. The use of healthcare data over a long period of time is similar to the use of tissue in biobanks. There is a low risk to subjects but it (...)
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  89.  2
    A Critique of the Regulation of Data Science in Healthcare Research in the European Union.M. M. Rumbold John & K. Pierscionek Barbara - 2017 - BMC Medical Ethics 18 (1):27.
    The EU offers a suitable milieu for the comparison and harmonisation of healthcare across different languages, cultures, and jurisdictions, which could provide improvements in healthcare standards across the bloc. There are specific ethico-legal issues with the use of data in healthcare research that mandate a different approach from other forms of research. The use of healthcare data over a long period of time is similar to the use of tissue in biobanks. There is a low risk to subjects but it (...)
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  90. Healthcare Professionals’ and Patients’ Perspectives on Consent to Clinical Genetic Testing: Moving Towards a More Relational Approach.Samuel Gabrielle Natalie, Dheensa Sandi, Farsides Bobbie, Fenwick Angela & Lucassen Anneke - 2017 - BMC Medical Ethics 18 (1):47.
    BackgroundThis paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.MethodsWe draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, how (...)
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  91.  1
    To Change or Not to Change - Translating and Culturally Adapting the Paediatric Version of the Moral Distress Scale-Revised.Margareta af Sandeberg, Marika Wenemark, Cecilia Bartholdson, Kim Lützén & Pernilla Pergert - 2017 - BMC Medical Ethics 18 (1):14.
    Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were (...)
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  92. To Change or Not to Change - Translating and Culturally Adapting the Paediatric Version of the Moral Distress Scale-Revised.Margareta af Sandeberg, Marika Wenemark, Cecilia Bartholdson, Kim Lützén & Pernilla Pergert - 2017 - BMC Medical Ethics 18 (1):14.
    BackgroundPaediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were (...)
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  93. Beyond Cultural Stereotyping: Views on End-of-Life Decision Making Among Religious and Secular Persons in the USA, Germany, and Israel.Mark Schweda, Silke Schicktanz, Aviad Raz & Anita Silvers - 2017 - BMC Medical Ethics 18 (1):13.
    End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on (...)
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  94.  1
    Beyond Cultural Stereotyping: Views on End-of-Life Decision Making Among Religious and Secular Persons in the USA, Germany, and Israel.Mark Schweda, Silke Schicktanz, Aviad Raz & Anita Silvers - 2017 - BMC Medical Ethics 18 (1):13.
    BackgroundEnd-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes.MethodsThe paper is based on a (...)
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  95. Ethics of Health Research with Prisoners in Canada.Diego S. Silva, Flora I. Matheson & James V. Lavery - 2017 - BMC Medical Ethics 18 (1):31.
    Despite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about what it means to conduct ethically sound health research with prisoners given the current realities of the Canadian system. Lessons from the Canadian system could presumably apply in other jurisdictions. (...)
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  96. Ethics of Health Research with Prisoners in Canada.Diego S. Silva, Flora I. Matheson & James V. Lavery - 2017 - BMC Medical Ethics 18 (1):31.
    BackgroundDespite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about what it means to conduct ethically sound health research with prisoners given the current realities of the Canadian system. Lessons from the Canadian system could presumably apply in other jurisdictions.Main (...)
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  97. Development of a Consensus Operational Definition of Child Assent for Research.Alan R. Tait & Michael E. Geisser - 2017 - BMC Medical Ethics 18 (1):41.
    There is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way. To this end, we describe a Delphi study that (...)
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  98. Development of a Consensus Operational Definition of Child Assent for Research.Alan R. Tait & Michael E. Geisser - 2017 - BMC Medical Ethics 18 (1):41.
    BackgroundThere is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way. To this end, we describe a Delphi study that (...)
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  99.  1
    Familiar Ethical Issues Amplified: How Members of Research Ethics Committees Describe Ethical Distinctions Between Disaster and Non-Disaster Research.Catherine M. Tansey, James Anderson, Renaud F. Boulanger, Lisa Eckenwiler, John Pringle, Lisa Schwartz & Matthew Hunt - 2017 - BMC Medical Ethics 18 (1):44.
    BackgroundThe conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available.MethodsWe aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the key (...)
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  100.  2
    Familiar Ethical Issues Amplified: How Members of Research Ethics Committees Describe Ethical Distinctions Between Disaster and Non-Disaster Research.Catherine M. Tansey, James Anderson, Renaud F. Boulanger, Lisa Eckenwiler, John Pringle, Lisa Schwartz & Matthew Hunt - 2017 - BMC Medical Ethics 18 (1):44.
    The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the (...)
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  101.  5
    Defining Reasonable Patient Standard and Preference for Shared Decision Making Among Patients Undergoing Anaesthesia in Singapore.J. L. J. Yek, A. K. Y. Lee, J. A. D. Tan, G. Y. Lin, T. Thamotharampillai & H. R. Abdullah - 2017 - BMC Medical Ethics 18 (1):6.
    BackgroundA cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent.MethodsA survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients’ perception of material risks, by trained interviewers. Patients’ demographics were obtained. Mann–Whitney U test (...)
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  102.  1
    Defining Reasonable Patient Standard and Preference for Shared Decision Making Among Patients Undergoing Anaesthesia in Singapore.J. L. J. Yek, A. K. Y. Lee, J. A. D. Tan, G. Y. Lin, T. Thamotharampillai & H. R. Abdullah - 2017 - BMC Medical Ethics 18 (1):6.
    A cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent. A survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients’ perception of material risks, by trained interviewers. Patients’ demographics were obtained. Mann–Whitney U (...)
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