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BMC Medical Ethics

Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P J Day, Michael Parker, Susan Bull
BACKGROUND: Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent to data sharing in January 2016...
November 7, 2018: BMC Medical Ethics
Maaike M Haan, Jelle L P van Gurp, Simone M Naber, A Stef Groenewoud
BACKGROUND: An important and supposedly impactful form of clinical ethics support is moral case deliberation (MCD). Empirical evidence, however, is limited with regard to its actual impact. With this literature review, we aim to investigate the empirical evidence of MCD, thereby a) informing the practice, and b) providing a focus for further research on and development of MCD in healthcare settings. METHODS: A systematic literature search was conducted in the electronic databases PubMed, CINAHL and Web of Science (June 2016)...
November 6, 2018: BMC Medical Ethics
Laura Williamson, Hannah Glaab
BACKGROUND: Vaccine hesitancy is a growing threat to public health. The reasons are complex but linked inextricably to a lack of trust in vaccines, expertise and traditional sources of authority. Efforts to increase immunization uptake in children in many countries that have seen a fall in vaccination rates are two-fold: addressing hesitancy by improving healthcare professional-parent exchange and information provision in the clinic; and, secondly, public health strategies that can override parental concerns and values with coercive measures such as mandatory and presumptive vaccination...
October 24, 2018: BMC Medical Ethics
Karine Dubé, Sara Gianella, Susan Concha-Garcia, Susan J Little, Andy Kaytes, Jeff Taylor, Kushagra Mathur, Sogol Javadi, Anshula Nathan, Hursch Patel, Stuart Luter, Sean Philpott-Jones, Brandon Brown, Davey Smith
BACKGROUND: The U.S. National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Mental Health (NIMH) have a new research priority: inclusion of terminally ill persons living with HIV (PLWHIV) in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego (UCSD) for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. DISCUSSION: As end-of-life (EOL) HIV cure research is relatively new, the scientific community has a timely opportunity to examine the related ethical challenges...
October 20, 2018: BMC Medical Ethics
Bjørn K Myskja, Morten Magelssen
BACKGROUND: In the debate on conscientious objection in healthcare, proponents of conscience rights often point to the imperative to protect the health professional's moral integrity. Their opponents hold that the moral integrity argument alone can at most justify accommodation of conscientious objectors as a "moral courtesy", as the argument is insufficient to establish a general moral right to accommodation, let alone a legal right. MAIN TEXT: This text draws on political philosophy in order to argue for a legal right to accommodation...
October 19, 2018: BMC Medical Ethics
Thierry Hurlimann, Iris Jaitovich Groisman, Béatrice Godard
BACKGROUND: The use of Next Generation Sequencing such as Whole Genome Sequencing (WGS) is a promising step towards a better understanding and treatment of neurological diseases. WGS can result into unexpected information (incidental findings, IFs), and information with uncertain clinical significance. In the context of a Genome Canada project on 'Personalized Medicine in the Treatment of Epilepsy', we intended to address these challenges surveying neurologists' opinions about the type of results that should be returned, and their professional responsibility toward recontacting patients regarding new discovered mutations...
September 29, 2018: BMC Medical Ethics
Morten Magelssen, Berge Solberg, Magne Supphellen, Guttorm Haugen
BACKGROUND: Norway's liberal abortion law allows for abortion on social indications, yet access to screening for fetal abnormalities is restricted. Norwegian regulation of, and public discourse about prenatal screening and diagnosis has been exceptional. In this study, we wanted to investigate whether the exceptional regulation is mirrored in public attitudes. METHOD: An electronic questionnaire with 11 propositions about prenatal screening and diagnosis was completed by 1617 Norwegian adults (response rate 8...
September 18, 2018: BMC Medical Ethics
Juntra Karbwang, Nut Koonrungsesomboon, Cristina E Torres, Edlyn B Jimenez, Gurpreet Kaur, Roli Mathur, Eti N Sholikhah, Chandanie Wanigatunge, Chih-Shung Wong, Kwanchanok Yimtae, Murnilina Abdul Malek, Liyana Ahamad Fouzi, Aisyah Ali, Beng Z Chan, Madawa Chandratilake, Shoen C Chiew, Melvyn Y C Chin, Manori Gamage, Irene Gitek, Mohammad Hakimi, Narwani Hussin, Mohd F A Jamil, Pavithra Janarsan, Madarina Julia, Suman Kanungo, Panduka Karunanayake, Sattian Kollanthavelu, Kian K Kong, Bing-Ling Kueh, Ragini Kulkarni, Paul P Kumaran, Ranjith Kumarasiri, Wei H Lim, Xin J Lim, Fatihah Mahmud, Jacinto B V Mantaring, Siti M Md Ali, Nurain Mohd Noor, Kopalasuntharam Muhunthan, Elanngovan Nagandran, Maisarah Noor, Kim H Ooi, Jebananthy A Pradeepan, Ahmad H Sadewa, Nilakshi Samaranayake, Shalini Sri Ranganathan, Wasanthi Subasingha, Sivasangari Subramaniam, Nadirah Sulaiman, Ju F Tay, Leh H Teng, Mei M Tew, Thipaporn Tharavanij, Peter S K Tok, Jayanie Weeratna, Tri Wibawa, Renu Wickremasinghe, Phanthipha Wongwai, Subhash Yadav
BACKGROUND: The use of lengthy, detailed, and complex informed consent forms (ICFs) is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in biomedical research...
September 15, 2018: BMC Medical Ethics
Daniel Neves Forte, Fernando Kawai, Cláudio Cohen
BACKGROUND: One of the biggest challenges of practicing medicine in the age of informational technology is how to conciliate the overwhelming amount of medical-scientific information with the multiple patients' values of modern pluralistic societies. To organize and optimize the the Decision-Making Process (DMP) of seriously ill patient care, we present a framework to be used by Healthcare Providers. The objective is to align Bioethics, Evidence-based Practice and Person-centered Care...
August 20, 2018: BMC Medical Ethics
Eisuke Nakazawa, Shoichi Maeda, Keiichiro Yamamoto, Aru Akabayashi, Yuzaburo Uetake, Margie H Shaw, Richard A Demme, Akira Akabayashi
BACKGROUND: This paper examines the ethical aspects of organ transplant surgery in which a donor heart is transplanted from a first recipient, following determination of death by neurologic criteria, to a second recipient. Retransplantation in this sense differs from that in which one recipient undergoes repeat heart transplantation of a newly donated organ, and is thus referred to here as "reuse cardiac organ transplantation." METHODS: Medical, legal, and ethical analysis, with a main focus on ethical analysis...
August 17, 2018: BMC Medical Ethics
Rachel Grace Son, Susan M Setta
BACKGROUND: The 1981 Uniform Determination of Death Act (UDDA) established the validity of both cardio-respiratory and neurological criteria of death. However, many religious traditions including most forms of Haredi Judaism (ultra-orthodox) and many varieties of Buddhism strongly disagree with death by neurological criteria (DNC). Only one state in the U.S., New Jersey, allows for both religious exemptions to DNC and provides continuation of health insurance coverage when an exception is invoked in its 1991 Declaration of Death Act (NJDDA)...
August 14, 2018: BMC Medical Ethics
Siun Gallagher, Miles Little, Claire Hooker
BACKGROUND: In most socialised health systems there are formal processes that manage resource scarcity and determine the allocation of funds to health services in accordance with their priority. In this analysis, part of a larger qualitative study examining the ethical issues entailed in doctors' participation as technical experts in priority setting, we describe the values and ethical commitments of doctors who engage in priority setting and make an empirically derived contribution towards the identification of an ethical framework for doctors' macroallocation work...
July 24, 2018: BMC Medical Ethics
Connie Wiskin, Jonathan Dowell, Catherine Hale
BACKGROUND: On elective students may not always be clear about safeguarding themselves and others. It is important that placements are safe, and ethically grounded. A concern for medical schools is equipping their students for exposure to and response to uncomfortable and/or unfamiliar requests in locations away from home, where their comfort and safety, or that of the patient, may be compromised. This can require legal, ethical, and/or moral reasoning on the part of the student. The goal of this article is to establish what students actually encounter on elective, to inform better preparing students for safe and ethical medical placements...
July 20, 2018: BMC Medical Ethics
Moli Paul, Lesley O'Hara, Priya Tah, Cathy Street, Athanasios Maras, Diane Purper Ouakil, Paramala Santosh, Giulia Signorini, Swaran Preet Singh, Helena Tuomainen, Fiona McNicholas
BACKGROUND: Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services (CAMHS). Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care...
July 18, 2018: BMC Medical Ethics
Michael Dunn, Jonathan Ives, Bert Molewijk, Jan Schildmann
This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of 'integrating' empirical methods and ethical argument as a standard for research practice within empirical bioethics...
July 13, 2018: BMC Medical Ethics
Stacy M Carter
This article provides a commentary on Standards of practice in empirical bioethics research by Ives and colleagues (in this Issue). There is much to admire in the paper, and in the demanding consensus-building process on which it reports. I discuss the problems and limits of methodological standardisation, and a central conceptual tension that appears to have divided participants. I suggest that the finished product should be understood as a record of a methodological conversation, rather than being used as a disciplinary tool to limit the evolution of empirical bioethics...
July 12, 2018: BMC Medical Ethics
Megan M Campbell, Jantina de Vries, Sibonile G Mqulwana, Michael M Mndini, Odwa A Ntola, Deborah Jonker, Megan Malan, Adele Pretorius, Zukiswa Zingela, Stephanus Van Wyk, Dan J Stein, Ezra Susser
BACKGROUND: Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? METHODS: 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region...
July 11, 2018: BMC Medical Ethics
Alan Cribb
This commentary welcomes the work of Ives et al. on Standards of practice in Empirical Bioethics, and especially the dialogical spirit in which the standards have been constructed and offered. It also raises some questions about the consistent interpretation and use of such standards.
July 11, 2018: BMC Medical Ethics
Jonathan Ives, Michael Dunn, Bert Molewijk, Jan Schildmann, Kristine Bærøe, Lucy Frith, Richard Huxtable, Elleke Landeweer, Marcel Mertz, Veerle Provoost, Annette Rid, Sabine Salloch, Mark Sheehan, Daniel Strech, Martine de Vries, Guy Widdershoven
BACKGROUND: This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds. METHODS: The consensus process used a modified Delphi approach. RESULTS: Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise)...
July 10, 2018: BMC Medical Ethics
Kristina Würth, Wolf Langewitz, Stella Reiter-Theil, Sylvie Schuster
BACKGROUND: In todays' super-diverse societies, communication and interaction in clinical encounters are increasingly shaped by linguistic, cultural, social and ethnic complexities. It is crucial to better understand the difficulties patients with migration background and healthcare professionals experience in their shared clinical encounters and to explore ethical aspects involved. METHODS: We accompanied 32 migrant patients (16 of Albanian and Turkish origin each) during their medical encounters at two outpatient clinics using an ethnographic approach (participant observation and semi-structured interviews with patients and healthcare professionals)...
July 4, 2018: BMC Medical Ethics
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