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BMC Medical Ethics

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https://www.readbyqxmd.com/read/28399922/the-elusive-ideal-of-inclusiveness-lessons-from-a-worldwide-survey-of-neurologists-on-the-ethical-issues-raised-by-whole-genome-sequencing
#1
Thierry Hurlimann, Iris Jaitovich Groisman, Béatrice Godard
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 from around the world to share their views and practices regarding the use of whole-genome sequencing in clinical neurology and its associated ethics...
April 11, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28388916/a-critique-of-the-regulation-of-data-science-in-healthcare-research-in-the-european-union
#2
John M M Rumbold, Barbara K Pierscionek
The EU offers a suitable milieu for the comparison and harmonisation of healthcare across different languages, cultures, and jurisdictions (albeit with a supranational legal framework), 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 is impossible to gain specific informed consent given the future possibilities for research...
April 8, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28381305/fair-is-fair-we-must-re-allocate-livers-for-transplant
#3
Brendan Parent, Arthur L Caplan
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 transplant recipients, the sickest in less liver-scarce regions get transplants much sooner and are at far lower risk of death than the sickest in more liver-scarce regions...
April 5, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28376811/smart-homes-private-homes-an-empirical-study-of-technology-researchers-perceptions-of-ethical-issues-in-developing-smart-home-health-technologies
#4
Giles Birchley, Richard Huxtable, Madeleine Murtagh, Ruud Ter Meulen, Peter Flach, Rachael Gooberman-Hill
BACKGROUND: 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...
April 4, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28376801/factors-affecting-willingness-to-share-electronic-health-data-among-california-consumers
#5
Katherine K Kim, Pamela Sankar, Machelle D Wilson, Sarah C Haynes
BACKGROUND: 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...
April 4, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28376776/the-ecouter-methodology-for-stakeholder-engagement-in-translational-research
#6
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
BACKGROUND: 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 (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them...
April 4, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28330487/a-qualitative-study-of-participants-views-on-re-consent-in-a-longitudinal-biobank
#7
Mary Dixon-Woods, David Kocman, Liz Brewster, Janet Willars, Graeme Laurie, Carolyn Tarrant
BACKGROUND: 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. METHODS: We conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank...
March 23, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28253882/principle-based-structured-case-discussions-do-they-foster-moral-competence-in-medical-students-a-pilot-study
#8
Orsolya Friedrich, Kay Hemmerling, Katja Kuehlmeyer, Stefanie Nörtemann, Martin Fischer, Georg Marckmann
BACKGROUND: 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. METHODS: Between 2012 and 2013, medical students were tested using Lind's Moral Competence Test (MCT) prior to and after completing different ethics classes. The experimental group (EG, N = 76) participated in principle-based structured case discussions (PBSCDs) and was compared with a control group with theory-based case discussions (TBCDs) (CG, N = 55)...
March 3, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28249603/the-importance-of-professional-values-from-clinical-nurses-perspective-in-hospitals-of-a-medical-university-in-iran
#9
Batool Poorchangizi, Jamileh Farokhzadian, Abbas Abbaszadeh, Moghaddameh Mirzaee, Fariba Borhani
BACKGROUND: 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. METHODS: The present cross-sectional study was conducted in 2016 in four educational hospitals of Kerman University of Medical Sciences, Iran...
March 1, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28249596/implicit-bias-in-healthcare-professionals-a-systematic-review
#10
Chloë FitzGerald, Samia Hurst
BACKGROUND: 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. METHODS: 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...
March 1, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28245820/unconventional-combinations-of-prospective-parents-ethical-challenges-faced-by-ivf-providers
#11
Robert Klitzman
BACKGROUND: Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements (e.g., gamete donations between family members), but many questions arise regarding how providers view and make decisions about these and other such arrangements. METHODS: Thirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed. RESULTS: 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...
February 28, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28235413/presumed-consent-licenses-and-limits-inferred-from-the-case-of-geriatric-hip-fractures
#12
Joseph Bernstein, Drake LeBrun, Duncan MacCourt, Jaimo Ahn
BACKGROUND: 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 doctrine of presumed consent...
February 24, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28231781/how-to-introduce-medical-ethics-at-the-bedside-factors-influencing-the-implementation-of-an-ethical-decision-making-model
#13
Barbara Meyer-Zehnder, Heidi Albisser Schleger, Sabine Tanner, Valentin Schnurrer, Deborah R Vogt, Stella Reiter-Theil, Hans Pargger
BACKGROUND: 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. METHODS: A medical ethics decision-making model called METAP was introduced on three intensive care units and two geriatric wards...
February 23, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28228145/donation-after-brain-circulation-determination-of-death
#14
Anne L Dalle Ave, James L Bernat
BACKGROUND: 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]. RESULTS: 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...
February 23, 2017: BMC Medical Ethics
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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