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BMC Medical Ethics

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https://www.readbyqxmd.com/read/27881139/next-of-kin-s-experiences-of-involvement-during-involuntary-hospitalisation-and-coercion
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
https://www.readbyqxmd.com/read/27825344/the-norwegian-national-project-for-ethics-support-in-community-health-and-care-services
#7
Morten Magelssen, Elisabeth Gjerberg, Reidar Pedersen, Reidun Førde, Lillian Lillemoen
BACKGROUND: Internationally, clinical ethics support has yet to be implemented systematically in community health and care services. A large-scale Norwegian project (2007-2015) attempted to increase ethical competence in community services through facilitating the implementation of ethics support activities in 241 Norwegian municipalities. The article describes the ethics project and the ethics activities that ensued. METHODS: The article first gives an account of the Norwegian ethics project...
November 8, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27821141/knowledge-attitude-and-practice-of-healthcare-ethics-among-resident-doctors-and-ward-nurses-from-a-resource-poor-setting-nepal
#8
Samaj Adhikari, Kumar Paudel, Arja R Aro, Tara Ballav Adhikari, Bipin Adhikari, Shiva Raj Mishra
BACKGROUND: Healthcare ethics is neglected in clinical practice in LMICs (Low and Middle Income Countries) such as Nepal. The main objective of this study was to assess the current status of knowledge, attitude and practice of healthcare ethics among resident doctors and ward nurses in a tertiary teaching hospital in Nepal. METHODS: This was a cross sectional study conducted among resident doctors (n = 118) and ward nurses (n = 86) in the largest tertiary care teaching hospital of Nepal during January- February 2016 with a self-administered questionnaire...
November 8, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27821118/the-intensive-care-lifeboat-a-survey-of-lay-attitudes-to-rationing-dilemmas-in-neonatal-intensive-care
#9
C Arora, J Savulescu, H Maslen, M Selgelid, D Wilkinson
BACKGROUND: Resuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit (NICU), meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people (non-health professionals) regarding resource allocation decisions in the NICU...
November 8, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27809825/becoming-partners-retaining-autonomy-ethical-considerations-on-the-development-of-precision-medicine
#10
Alessandro Blasimme, Effy Vayena
Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants' attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals' moral interests...
November 4, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27806700/autonomy-of-the-child-in-the-south-african-context-is-a-12%C3%A2-year-old-of-sufficient-maturity-to-consent-to-medical-treatment
#11
Wandile Ganya, Sharon Kling, Keymanthri Moodley
BACKGROUND: A child is a developing person with evolving capacities that include autonomy, mental (decisional) capacity and capacity to assume responsibility. Hence, children are entitled to participatory (autonomy) rights in South Africa as observed in the Children's Act 38 of 2005. According to section 129 of the Act a child may consent to his or her own medical treatment provided that he or she is over the age of 12 years and is of sufficient maturity and decisional capacity to understand the various implications of the treatment including the risks and benefits thereof...
November 2, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27770794/national-ethics-guidance-in-sub-saharan-africa-on-the-collection-and-use-of-human-biological-specimens-a-systematic-review
#12
Francis Barchi, Madison T Little
BACKGROUND: Ethical and regulatory guidance on the collection and use of human biospecimens (HBS) for research forms an essential component of national health systems in Sub-Saharan Africa (SSA), where rapid advances in genetic- and genomic-based technologies are fueling clinical trials involving HBS and the establishment of large-scale biobanks. METHODS: An extensive multi-level search for publicly available ethics regulatory guidance was conducted for each SSA country...
October 22, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27770780/seeking-consent-for-research-with-indigenous-communities-a-systematic-review
#13
Emily F M Fitzpatrick, Alexandra L C Martiniuk, Heather D'Antoine, June Oscar, Maureen Carter, Elizabeth J Elliott
BACKGROUND: When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. METHODS: A systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review...
October 22, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27769273/communicating-brca-research-results-to-patients-enrolled-in-international-clinical-trials-lessons-learnt-from-the-ago-ovar-16-study
#14
David J Pulford, Philipp Harter, Anne Floquet, Catherine Barrett, Dong Hoon Suh, Michael Friedlander, José Angel Arranz, Kosei Hasegawa, Hiroomi Tada, Peter Vuylsteke, Mansoor R Mirza, Nicoletta Donadello, Giovanni Scambia, Toby Johnson, Charles Cox, John K Chan, Martin Imhof, Thomas J Herzog, Paula Calvert, Pauline Wimberger, Dominique Berton-Rigaud, Myong Cheol Lim, Gabriele Elser, Chun-Fang Xu, Andreas du Bois
BACKGROUND: The focus on translational research in clinical trials has the potential to generate clinically relevant genetic data that could have importance to patients. This raises challenging questions about communicating relevant genetic research results to individual patients. METHODS: An exploratory pharmacogenetic analysis was conducted in the international ovarian cancer phase III trial, AGO-OVAR 16, which found that patients with clinically important germ-line BRCA1/2 mutations had improved progression-free survival prognosis...
October 21, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27769232/research-in-disaster-settings-a-systematic-qualitative-review-of-ethical-guidelines
#15
Signe Mezinska, Péter Kakuk, Goran Mijaljica, Marcin Waligóra, Dónal P O'Mathúna
BACKGROUND: Conducting research during or in the aftermath of disasters poses many specific practical and ethical challenges. This is particularly the case with research involving human subjects. The extraordinary circumstances of research conducted in disaster settings require appropriate regulations to ensure the protection of human participants. The goal of this study is to systematically and qualitatively review the existing ethical guidelines for disaster research by using the constant comparative method (CCM)...
October 21, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27756370/an-analysis-of-common-ethical-justifications-for-compassionate-use-programs-for-experimental-drugs
#16
Kasper Raus
BACKGROUND: When a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years. This raises an issue for drugs which could benefit terminally ill patients. These patients might set their hopes on the experimental drug but are unable to wait since they are likely to pass away before the drug is available. As a means of nevertheless getting access to experimental drug, many seriously ill and terminally ill patients are therefore very willing to participate in randomised controlled trials...
October 18, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27756366/the-development-and-validation-of-the-advance-care-planning-questionnaire-in-malaysia
#17
Pauline Siew Mei Lai, Salinah Mohd Mudri, Karuthan Chinna, Sajaratulnisah Othman
BACKGROUND: Advance care planning is a voluntary process whereby individual preferences, values and beliefs are used to aid a person in planning for end-of-life care. Currently, there is no local instrument to assess an individual's awareness and attitude towards advance care planning. This study aimed to develop an Advance Care Planning Questionnaire and to determine its validity and reliability among older people in Malaysia. METHODS: The Advance Care Planning Questionnaire was developed based on literature review...
October 18, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27733160/personalized-assent-for-pediatric-biobanks
#18
Noor A A Giesbertz, Karen Melham, Jane Kaye, Johannes J M van Delden, Annelien L Bredenoord
Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children's samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent into pediatric biobanking practice and consider both the content and process of personalized assent...
October 12, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27724936/disclosing-neuroimaging-incidental-findings-a-qualitative-thematic-analysis-of-health-literacy-challenges
#19
Caitlin E Rancher, Jody M Shoemaker, Linda E Petree, Mark Holdsworth, John P Phillips, Deborah L Helitzer
BACKGROUND: Returning neuroimaging incidental findings (IF) may create a challenge to research participants' health literacy skills as they must interpret and make appropriate healthcare decisions based on complex radiology jargon. Disclosing IF can therefore present difficulties for participants, research institutions and the healthcare system. The purpose of this study was to identify the extent of the health literacy challenges encountered when returning neuroimaging IF. We report on findings from a retrospective survey and focus group sessions with major stakeholders involved in disclosing IF...
October 11, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27724893/-it-s-all-about-trust-reflections-of-researchers-on-the-complexity-and-controversy-surrounding-biobanking-in-south-africa
#20
Keymanthri Moodley, Shenuka Singh
BACKGROUND: Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers must balance the scientific imperative of collecting, storing and sharing high quality biological samples with obligations to donors/participants, communities, international collaborators, regulatory and ethics authorities...
October 10, 2016: BMC Medical Ethics
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