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BMC Medical Ethics

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
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
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
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
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
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
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
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
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
Jane H Williams, Stacy M Carter
BACKGROUND: Cervical cancer disproportionately burdens disadvantaged women. Organised cervical screening aims to make cancer prevention available to all women in a population, yet screening uptake and cancer incidence and mortality are strongly correlated with socioeconomic status (SES). Reaching underscreened populations is a stated priority in many screening programs, usually with an emphasis on something like 'equity'. Equity is a poorly defined and understood concept. We aimed to explain experts' perspectives on how cervical screening programs might justifiably respond to 'the underscreened'...
October 6, 2016: BMC Medical Ethics
Victoria Shepherd
BACKGROUND: Society is failing in its moral obligation to improve the standard of healthcare provided to vulnerable populations, such as people who lack decision making capacity, by a misguided paternalism that seeks to protect them by excluding them from medical research. Uncertainties surround the basis on which decisions about research participation is made under dual regulatory regimes, which adds further complexity. Vulnerable individuals' exclusion from research as a result of such regulation risks condemning such populations to poor quality care as a result of 'evidence biased' medicine...
2016: BMC Medical Ethics
Kieran C O'Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A Koenig, Donald J Willison
BACKGROUND: Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections...
2016: BMC Medical Ethics
Cristina M Beltran-Aroca, Eloy Girela-Lopez, Eliseo Collazo-Chao, Manuel Montero-Pérez-Barquero, Maria C Muñoz-Villanueva
BACKGROUND: Respect for confidentiality is important to safeguard the well-being of patients and ensure the confidence of society in the doctor-patient relationship. The aim of our study is to examine real situations in which there has been a breach of confidentiality, by means of direct observation in clinical practice. METHODS: By means of direct observation, our study examines real situations in which there has been a breach of confidentiality in a tertiary hospital...
2016: BMC Medical Ethics
Suzanne Audrey, Lindsey Brown, Rona Campbell, Andy Boyd, John Macleod
BACKGROUND: Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study within which the Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. PEARL incorporated qualitative research to seek the views of young people about data linkage, including their opinions about appropriate safeguards and research governance. In this paper we focus on views expressed about the purpose and composition of research ethics committees...
2016: BMC Medical Ethics
Victoria Coathup, Harriet J A Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P Takahashi, Kazuto Kato
BACKGROUND: As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere...
2016: BMC Medical Ethics
Minsu Ock, Hyun Joo Kim, Min-Woo Jo, Sang-Il Lee
BACKGROUND: Experience with open disclosure and its study are restricted to certain western countries. In addition, there are concerns that open disclosure may be less suitable in non-western countries. The present study explored and compared the in-depth perceptions of the general public and physicians regarding open disclosure in Korea. METHODS: We applied the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist to this qualitative study...
2016: BMC Medical Ethics
Miguel Ángel Royo-Bordonada, Fernando J García López
BACKGROUND: The recent Ebola virus disease (EVD) outbreak, with 28,646 reported cases and 11,323 deaths, was declared a public health emergency of international interest by the World Health Organisation. In Spain, a single reported case triggered a public health crisis of a markedly media-centred nature. The approach to the first EVD epidemic has given rise to various ethical considerations around the world. We address the most relevant ethical considerations emanating from the management of EVD in Spain...
2016: BMC Medical Ethics
Stacey A Page, Kiran Pohar Manhas, Daniel A Muruve
BACKGROUND: Personal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research...
2016: BMC Medical Ethics
Wahid Bouida, Mohamed Habib Grissa, Asma Zorgati, Kaouthar Beltaief, Hamdi Boubaker, Asma Sriha, Riadh Boukef, Semir Nouira
BACKGROUND: Few studies have identified the willingness rate of developing countries population to be enrolled in clinical trials. METHODS: All participants including patients (n = 612), healthy volunteers (n = 354) and doctors (n = 134) completed a questionnaire to examine factors affecting the consent to participate in medical research. RESULTS: Overall, 80 % of the included population agree to participate in health research...
2016: BMC Medical Ethics
Giles Birchley, Kerry Jones, Richard Huxtable, Jeremy Dixon, Jenny Kitzinger, Linda Clare
BACKGROUND: In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency...
2016: BMC Medical Ethics
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