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BMC Medical Ethics

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https://www.readbyqxmd.com/read/28219363/to-change-or-not-to-change-translating-and-culturally-adapting-the-paediatric-version-of-the-moral-distress-scale-revised-mds-r
#1
Margareta Af Sandeberg, Marika Wenemark, Cecilia Bartholdson, Kim Lützén, Pernilla Pergert
BACKGROUND: 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 (MDS-R) 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...
February 20, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28212642/beyond-cultural-stereotyping-views-on-end-of-life-decision-making-among-religious-and-secular-persons-in-the-usa-germany-and-israel
#2
Mark Schweda, Silke Schicktanz, Aviad Raz, Anita Silvers
BACKGROUND: 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...
February 17, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28202021/-i-passed-the-test-evidence-of-diagnostic-misconception-in-the-recruitment-of-population-controls-for-an-h3africa-genomic-study-in-cape-town-south-africa
#3
Francis Masiye, Bongani Mayosi, Jantina de Vries
BACKGROUND: 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 (RHDGen) at the University of Cape Town in South Africa...
February 15, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28178953/human-rights-violations-in-organ-procurement-practice-in-china
#4
Norbert W Paul, Arthur Caplan, Michael E Shapiro, Charl Els, Kirk C Allison, Huige Li
BACKGROUND: 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. DISCUSSION: We have collected and analysed available evidence on human rights violations in the organ procurement practice in China...
February 8, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28166795/ethical-framework-for-the-detection-management-and-communication-of-incidental-findings-in-imaging-studies-building-on-an-interview-study-of-researchers-practices-and-perspectives
#5
Eline M Bunnik, Lisa van Bodegom, Wim Pinxten, Inez D de Beaufort, Meike W Vernooij
BACKGROUND: 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 incidental findings in imaging research...
February 6, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28166775/clinical-ethics-issues-in-hiv-care-in-canada-an-institutional-ethnographic-study
#6
Chris Kaposy, Nicole R Greenspan, Zack Marshall, Jill Allison, Shelley Marshall, Cynthia Kitson
BACKGROUND: 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. METHODS: 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 issues in the clinics, and to understand how health care providers and clinic clients manage and resolve these issues...
February 6, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28153006/regulation-of-genomic-and-biobanking-research-in-africa-a-content-analysis-of-ethics-guidelines-policies-and-procedures-from-22-african-countries
#7
Jantina de Vries, Syntia Nchangwi Munung, Alice Matimba, Sheryl McCurdy, Odile Ouwe Missi Oukem-Boyer, Ciara Staunton, Aminu Yakubu, Paulina Tindana
BACKGROUND: 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 based on sharing, causing confusion about what is allowed, where and when...
February 2, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28152998/critical-appraisal-of-advance-directives-given-by-patients-with-fatal-acute-stroke-an-observational-cohort-study
#8
A Alonso, D Dörr, K Szabo
BACKGROUND: Advance directives (AD) 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. METHODS: We analyzed the ADs of patients with fatal stroke, focusing on: (a) their availability and type, (b) stated circumstances to which the AD should apply, and (c) stated wishes regarding specific treatment options...
February 2, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28148256/defining-reasonable-patient-standard-and-preference-for-shared-decision-making-among-patients-undergoing-anaesthesia-in-singapore
#9
J L J Yek, A K Y Lee, J A D Tan, G Y Lin, T Thamotharampillai, H R Abdullah
BACKGROUND: 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. METHODS: 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...
February 2, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28129753/measuring-value-sensitivity-in-medicine
#10
Christian Ineichen, Markus Christen, Carmen Tanner
BACKGROUND: Value 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...
January 28, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28122615/dynamic-consent-a-potential-solution-to-some-of-the-challenges-of-modern-biomedical-research
#11
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
BACKGROUND: Innovations 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...
January 25, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28114911/the-intention-to-disclose-medical-errors-among-doctors-in-a-referral-hospital-in-north-malaysia
#12
Arvinder-Singh Hs, Abdul Rashid
BACKGROUND: In 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. METHODS: This cross-sectional study was conducted at a tertiary public hospital from July- December 2015 among 276 randomly selected doctors...
January 23, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28103849/-how-do-ethnic-minority-patients-experience-the-intercultural-care-encounter-in-hospitals-a-systematic-review-of-qualitative-research
#13
Liesbet Degrie, Chris Gastmans, Lieslot Mahieu, Bernadette Dierckx de Casterlé, Yvonne Denier
BACKGROUND: In 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...
January 19, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28077127/navigating-social-and-ethical-challenges-of-biobanking-for-human-microbiome-research
#14
Kim H Chuong, David M Hwang, D Elizabeth Tullis, Valerie J Waters, Yvonne C W Yau, David S Guttman, Kieran C O'Doherty
BACKGROUND: Biobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications (ELSI). While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate. DISCUSSION: We 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 of pediatric and adult patients...
January 11, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/27881139/next-of-kin-s-experiences-of-involvement-during-involuntary-hospitalisation-and-coercion
#15
Reidun Førde, Reidun Norvoll, Marit Helene Hem, Reidar Pedersen
BACKGROUND: Norway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin (NOK) during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK's views and experiences of involvement during involuntary hospitalisation in Norway. METHODS: We performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times...
November 24, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27876015/on-normative-judgments-and-ethics
#16
EDITORIAL
Ognjen Arandjelović
Recent rapid technological and medical advance has more than ever before brought to the fore a spectrum of problems broadly categorized under the umbrella of 'ethics of human enhancement'. Some of the most contentious issues are typified well by the arguments put forward in a recent article on human cognitive enhancement authored by Garasic and Lavazza. Herein I analyse some of the assumptions made in their work and highlight important flaws. In particular I address the problems associated with the distinction between 'treatment' and 'enhancement', and 'natural' vs...
November 22, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27842524/introduction-to-the-article-collection-translation-in-healthcare-ethical-legal-and-social-implications
#17
EDITORIAL
Michael Morrison, Donna Dickenson, Sandra Soo-Jin Lee
New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection...
November 14, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27832780/public-responses-to-the-sharing-and-linkage-of-health-data-for-research-purposes-a-systematic-review-and-thematic-synthesis-of-qualitative-studies
#18
Mhairi Aitken, Jenna de St Jorre, Claudia Pagliari, Ruth Jepson, Sarah Cunningham-Burley
BACKGROUND: The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence...
November 10, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27829409/-i-just-think-that-we-should-be-informed-a-qualitative-study-of-family-involvement-in-advance-care-planning-in-nursing-homes
#19
Lisbeth Thoresen, Lillian Lillemoen
BACKGROUND: As part of the research project "End-of-life Communication in Nursing Homes. Patient Preferences and Participation", we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members' participation and involvement in ACP- conversations may promote nursing home patients' participation in decisions on future treatment and end-of-life care...
November 10, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27825378/buying-and-selling-human-eggs-infertility-providers-ethical-and-other-concerns-regarding-egg-donor-agencies
#20
Robert Klitzman
BACKGROUND: Egg donor agencies are increasingly being used as part of IVF in the US, but are essentially unregulated, posing critical ethical and policy questions concerning how providers view and use them, and what the implications might be. METHODS: Thirty-seven in-depth interviews of approximately 1 h were conducted - with 27 IVF providers and 10 patients. RESULTS: Clinicians vary in their views and interactions concerning egg donor agencies, ranging widely in whether and how often they use agencies...
November 8, 2016: BMC Medical Ethics
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