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BMC Medical Ethics

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https://www.readbyqxmd.com/read/28915865/informed-consent-and-registry-based-research-the-case-of-the-danish-circumcision-registry
#1
Thomas Ploug, Søren Holm
BACKGROUND: Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark...
September 15, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28841862/erratum-to-the-liverpool-care-pathway-discarded-in-cancer-patients-but-good-enough-for-dying-nursing-home-patients-a-systematic-review
#2
Bettina S Husebo, Elisabeth Flo, Knut Engedal
No abstract text is available yet for this article.
August 25, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28810914/eliciting-meta-consent-for-future-secondary-research-use-of-health-data-using-a-smartphone-application-a-proof-of-concept-study-in-the-danish-population
#3
Thomas Ploug, Søren Holm
BACKGROUND: The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent or not at all...
August 15, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28807022/ethical-issues-of-informed-consent-in-malaria-research-proposals-submitted-to-a-research-ethics-committee-in-thailand-a-retrospective-document-review
#4
Pornpimon Adams, Sukanya Prakobtham, Chanthima Limpattaracharoen, Sumeth Suebtrakul, Pitchapa Vutikes, Srisin Khusmith, Polrat Wilairatana, Paul Adams, Jaranit Kaewkungwal
BACKGROUND: The informed-consent process should be one of meaningful information exchange between researchers and study participants. One of the responsibilities of research ethics committees is to oversee appropriate informed consent. The committee must consider various matters before deciding whether the process is appropriate, including the adequacy and completeness of the written information provided to study participants, and the process of obtaining informed consent. This study aimed to identify, quantitatively and qualitatively, consent-related issues in different types of malaria proposals submitted to the Faculty of Tropical Medicine, Ethics Committee...
August 14, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28797266/does-growing-up-with-a-physician-influence-the-ethics-of-medical-students-relationships-with-the-pharmaceutical-industry-the-cases-of-the-us-and-poland
#5
Marta Makowska
BACKGROUND: Medical schools have a major impact on future doctors' ethics and their attitudes towards cooperation with the pharmaceutical industry. From childhood, medical students who are related to a physician are exposed to the characteristics of a medical career and learn its professional ethics not only in school but also in the family setting. The present paper sought to answer the research question: 'How does growing up with a physician influence medical students' perceptions of conflicts of interest in their relationships with industry?' METHODS: An anonymous questionnaire was completed by 451 medical students from four Philadelphia medical schools and 554 medical students from Warsaw Medical University during 2013...
August 10, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28793905/the-liverpool-care-pathway-a-systematic-review-discarded-in-cancer-patients-but-good-enough-for-dying-nursing-home-patients
#6
Bettina S Husebø, Elisabeth Flo, Knut Engedal
BACKGROUND: The Liverpool Care Pathway (LCP) is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for dying people with dementia...
August 9, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28789658/healthcare-professionals-and-patients-perspectives-on-consent-to-clinical-genetic-testing-moving-towards-a-more-relational-approach
#7
Gabrielle Natalie Samuel, Sandi Dheensa, Bobbie Farsides, Angela Fenwick, Anneke Lucassen
BACKGROUND: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. METHODS: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015)...
August 8, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28764782/pre-and-post-testing-counseling-considerations-for-the-provision-of-expanded-carrier-screening-exploration-of-european-geneticists-views
#8
Sandra Janssens, Davit Chokoshvili, Danya F Vears, Anne De Paepe, Pascal Borry
BACKGROUND: Carrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening (ECS), which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice...
August 1, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28701168/erratum-to-ethics-review-of-studies-during-public-health-emergencies-the-experience-of-the-who-ethics-review-committee-during-the-ebola-virus-disease-epidemic
#9
Emilie Alirol, Annette C Kuesel, Maria Magdalena Guraiib, Vânia de la Fuente-Núñez, Abha Saxena, Melba F Gomes
No abstract text is available yet for this article.
July 12, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28659166/familiar-ethical-issues-amplified-how-members-of-research-ethics-committees-describe-ethical-distinctions-between-disaster-and-non-disaster-research
#10
Catherine M Tansey, James Anderson, Renaud F Boulanger, Lisa Eckenwiler, John Pringle, Lisa Schwartz, Matthew Hunt
BACKGROUND: The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. METHODS: We aim to answer the following questions: 1) what do research ethics committee (REC) members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (LMICs) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members...
June 28, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28651650/ethics-review-of-studies-during-public-health-emergencies-the-experience-of-the-who-ethics-review-committee-during-the-ebola-virus-disease-epidemic
#11
Emilie Alirol, Annette C Kuesel, Maria Magdalena Guraiib, Vânia de la Fuente-Núñez, Abha Saxena, Melba F Gomes
BACKGROUND: Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee (WHO-ERC) was heavily involved in reviews and ethics discussions...
June 26, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28629343/comparative-effectiveness-research-what-to-do-when-experts-disagree-about-risks
#12
Reidar K Lie, Francis K L Chan, Christine Grady, Vincent H Ng, David Wendler
BACKGROUND: Ethical issues related to comparative effectiveness research, or research that compares existing standards of care, have recently received considerable attention. In this paper we focus on how Ethics Review Committees (ERCs) should evaluate the risks of comparative effectiveness research. MAIN TEXT: We discuss what has been a prominent focus in the debate about comparative effectiveness research, namely that it is justified when "nothing is known" about the comparative effectiveness of the available alternatives...
June 19, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28599638/development-of-a-consensus-operational-definition-of-child-assent-for-research
#13
Alan R Tait, Michael E Geisser
BACKGROUND: There is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way...
June 9, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28583175/are-advance-directives-helpful-for-good-end-of-life-decision-making-a-cross-sectional-survey-of-health-professionals
#14
Eimantas Peicius, Aurelija Blazeviciene, Raimondas Kaminskas
BACKGROUND: This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union (EU) where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, a study was designed to examine health professionals' understanding and preferences related to advance directives...
June 5, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28569156/how-chinese-clinicians-face-ethical-and-social-challenges-in-fecal-microbiota-transplantation-a-questionnaire-study
#15
Yonghui Ma, Jinqiu Yang, Bota Cui, Hongzhi Xu, Chuanxing Xiao, Faming Zhang
BACKGROUND: Fecal microbiota transplantation (FMT) is reportedly the most effective therapy for relapsing Clostridium Difficile infection (CDI) and a potential therapeutic option for many diseases. It also poses important ethical concerns. This study is an attempt to assess clinicians' perception and attitudes towards ethical and social challenges raised by fecal microbiota transplantation. METHODS: A questionnaire was developed which consisted of 20 items: four items covered general aspects, nine were about ethical aspects such as informed consent and privacy issues, four concerned social and regulatory issues, and three were about an FMT bank...
May 31, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28558751/a-14-day-limit-for-bioethics-the-debate-over-human-embryo-research
#16
Giulia Cavaliere
BACKGROUND: This article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies (2016), scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until the 14th day after fertilisation...
May 30, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28545519/staff-s-normative-attitudes-towards-coercion-the-role-of-moral-doubt-and-professional-context-a-cross-sectional-survey-study
#17
Bert Molewijk, Almar Kok, Tonje Husum, Reidar Pedersen, Olaf Aasland
BACKGROUND: The use of coercion is morally problematic and requires an ongoing critical reflection. We wondered if not knowing or being uncertain whether coercion is morally right or justified (i.e. experiencing moral doubt) is related to professionals' normative attitudes regarding the use of coercion. METHODS: This paper describes an explorative statistical analysis based on a cross-sectional survey across seven wards in three Norwegian mental health care institutions...
May 25, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28539111/written-versus-verbal-consent-a-qualitative-study-of-stakeholder-views-of-consent-procedures-used-at-the-time-of-recruitment-into-a-peripartum-trial-conducted-in-an-emergency-setting
#18
J Lawton, N Hallowell, C Snowdon, J E Norman, K Carruthers, F C Denison
BACKGROUND: Obtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women's and staff views about the consent procedures used during the internal pilot of a trial (GOT-IT), where the protocol permitted staff to gain verbal consent at recruitment...
May 24, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28506267/a-qualitative-study-on-acceptable-levels-of-risk-for-pregnant-women-in-clinical-research
#19
Indira S E van der Zande, Rieke van der Graaf, Martijn A Oudijk, Johannes J M van Delden
BACKGROUND: There is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as a case-study...
May 15, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28494760/the-picture-talk-project-starting-a-conversation-with-community-leaders-on-research-with-remote-aboriginal-communities-of-australia
#20
E F M Fitzpatrick, G Macdonald, A L C Martiniuk, H D'Antoine, J Oscar, M Carter, T Lawford, E J Elliott
BACKGROUND: Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. METHODS: The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia...
May 11, 2017: BMC Medical Ethics
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