9. Culture, consent, and community

2018 ◽  
pp. 105-117
Author(s):  
Michael Dunn ◽  
Tony Hope
Keyword(s):  
Medical Ethics ◽  
Medical Research ◽  
Cultural Differences ◽  
Ethical Issues ◽  
Western Countries ◽  
Advisory Boards ◽  
Protection Of Participants ◽  
Community Advisory Boards ◽  
Ethical Obligations

Cultural differences within and across societies can also challenge our assumptions and approaches to medical ethics and require us to reconsider our ethical obligations to individuals. Medical research involving collaboration between widely varying cultures is one context that is particularly problematic. ‘Culture, consent, and community’ discusses the guidelines for medical research, which highlights four main ethical issues: respect for the autonomy of the potential participants in research; protection of participants from the risk of harm; the value and quality of the research; and aspects of justice. It then considers how to avoid the imposition of Western views and practices on non-Western countries by endorsing respectful collaboration through community advisory boards.

scholarly journals Motivations and perceptions of community advisory boards in the ethics of medical research: the case of the Thai-Myanmar border

2014 ◽  
Vol 15 (1) ◽  
Author(s):  
Khin Maung Lwin ◽  
Phaik Yeong Cheah ◽  
Phaik Kin Cheah ◽  
Nicholas J White ◽  
Nicholas P J Day ◽  
...  
Keyword(s):  
Medical Research ◽  
Advisory Boards ◽  
Community Advisory Boards

OP27 Engaging Patients: The EuroCAB Programme

2019 ◽  
Vol 35 (S1) ◽  
pp. 6-6
Author(s):  
François Houyez ◽  
Rob Camp
Keyword(s):  
Rare Diseases ◽  
Controlled Trial ◽  
Target Population ◽  
Pricing Policy ◽  
Health Technologies ◽  
Advisory Boards ◽  
Patient Reported ◽  
Community Advisory Boards

IntroductionWhen developing a health technology that requires clinical studies, developers institute working relations with clinical investigators. In certain diseases areas, patients' representatives create their own advisory boards, which proved their utility in the early 90s, in particular for the development of products to treat HIV infection. Inspired by this model, where patients with a same disease join and meet with relevant developers and discuss all aspects of the research, the European Organisation for Rare Diseases (EURORDIS) proposes a new programme of such Community Advisory Boards for Rare Diseases (CAB).MethodsFor this programme, EURORDIS invites developers to sign a Charter of principles when engaging with patients, and provides guidelines on CABs, together with a mentoring programme for patients’ networks that are less experienced with the development and the evaluation of health technologies. CABs are driven by patients who set their agenda, who sign a Memorandum of Understanding with each developer, and who organise the sessions. Sessions typically last for two to four days during which different meetings with different developers can take place, or trainings. All meetings can take place under confidentiality arrangements, and minutes are written to keep track and to follow-up with all points discussed. Participants and agendas are made publicResultsAs of 2018, four CABs exist and operate (for tuberous sclerosis complex, for scleroderma, for cystic fibrosis, for Duchenne muscular dystrophy) and 18 others are in discussion with many due to start in 2019. Topics discussed cover the target population, the study feasibility, the endpoints including patient reported outcomes, the comparator choice and/or the acceptance of a placebo controlled trial, the quality of life, the practical aspects of the trials, and the identification of previously unknown or unmet patient needs/preferences. For products which are more advanced in their life-cycle, discussions can also cover compassionate use, pricing policy, relative efficacy etc.ConclusionsThis represents a well-structured programme for the engagement of patients, where collective thinking and exchange between different patients ensure high quality dialogue with developers and can inform HTA also.

scholarly journals “Teach for ethics in palliative care”: a mixed-method evaluation of a medical ethics training programme

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Ludovica De Panfilis ◽  
Silvia Tanzi ◽  
Marta Perin ◽  
Elena Turola ◽  
Giovanna Artioli
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Medical Ethics ◽  
Mixed Method ◽  
Health Care Professionals ◽  
Ethical Issues ◽  
Training Programme ◽  
Ethical Awareness

Abstract Background Training in medical ethics aims to educate health care professionals in dealing with daily care ethical issues. To guarantee quality of life and spiritual and emotional support, palliative care professionals have to develop ethical and relational skills. We propose the implementation and evaluation of a specialized training programme in medical ethics dedicated to a hospital-based Palliative Care Unit. Methods This study is a mixed-method before-after evaluation with data triangulation. Results The results highlight that participants developed their ethical knowledge, and a deeper ethical awareness. They also felt more confident and motivated to widely apply ethical reflections and reasonings in their daily practice. Conclusion The participants appreciated the innovative structure of the training, especially regarding the integration of the theoretical-interactive and practical parts. However, they recommended increasing the number of concrete occasions for ethical supervision and practical application of what they learned during the programme. The training programme also has some potential practical implications: the development of advanced ethical skills within a hospital-based PC team may improve the quality of life of the patients and their families. In addition, health care professionals with advanced ethical competencies are able to educate patients and their families towards more active participation in the decision-making process.

Medical research

2021 ◽  
pp. 211-218
Author(s):  
Anna Smajdor ◽  
Jonathan Herring ◽  
Robert Wheeler
Keyword(s):  
Medical Research ◽  
Ethical Issues ◽  
Legal Regulation ◽  
Important Distinction ◽  
Protection Of Participants ◽  
Therapeutic Research ◽  
Legal And Ethical Issues

This chapter discusses the legal and ethical issues related to medical research. It outlines international and national legal regulation. It discusses the important distinction between therapeutic and non-therapeutic research. The importance of consent and the protection of participants is highlighted.

Women's healthcare providers: Work factors, personality, and stress

2019 ◽  
Vol 47 (7) ◽  
pp. 1-11
Author(s):  
Victoria A. Farrow ◽  
Anthony Ahrens ◽  
Kathleen C. Gunthert ◽  
Jay Schulkin
Keyword(s):  
Cultural Differences ◽  
Perceived Stress ◽  
Healthcare Providers ◽  
Descriptive Statistics ◽  
Related Factors ◽  
Work Related ◽  
Work Factors ◽  
Physician Stress ◽  
Linear Regressions

We assessed neuroticism, perceived stress, and work-related factors among obstetrician-gynecologists (ob-gyns), and examined the relationships between these variables. Surveys were sent to 500 physician members of the American College of Obstetricians and Gynecologists and we received 287 (57.4%) completed responses. Analyses included descriptive statistics and linear regressions. Ob-gyns reported high levels of perceived stress. After controlling for neuroticism, variables that significantly predicted stress levels included average hours worked, perception of working too many hours, colleague support for work–home balance, isolation due to gender/cultural differences, and perception of workplace control. Because these work-related factors are linked to stress even when controlling for neuroticism, administrators and physicians may consider whether any of these factors are modifiable to mitigate physician stress. This in turn may affect physicians' own health and the quality of care patients receive.

scholarly journals Comprehensive survey among statistical members of medical ethics committees in Germany on their personal impression of completeness and correctness of biostatistical aspects of submitted study protocols

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e032864
Author(s):  
Geraldine Rauch ◽  
Lorena Hafermann ◽  
Ulrich Mansmann ◽  
Iris Pigeot
Keyword(s):  
Medical Ethics ◽  
Missing Values ◽  
Sample Size Calculation ◽  
Ethics Committees ◽  
Secondary Outcome ◽  
Study Protocols ◽  
Individual Assessment ◽  
Statistical Problems ◽  
Multiple Comparison Procedures

ObjectivesTo assess biostatistical quality of study protocols submitted to German medical ethics committees according to personal appraisal of their statistical members.DesignWe conducted a web-based survey among biostatisticians who have been active as members in German medical ethics committees during the past 3 years.SettingThe study population was identified by a comprehensive web search on websites of German medical ethics committees.ParticipantsThe final list comprised 86 eligible persons. In total, 57 (66%) completed the survey.QuestionnaireThe first item checked whether the inclusion criterion was met. The last item assessed satisfaction with the survey. Four items aimed to characterise the medical ethics committee in terms of type and location, one item asked for the urgency of biostatistical training addressed to the medical investigators. The main 2×12 items reported an individual assessment of the quality of biostatistical aspects in the submitted study protocols, while distinguishing studies according to the German Medicines Act (AMG)/German Act on Medical Devices (MPG) and studies non-regulated by these laws.Primary and secondary outcome measuresThe individual assessment of the quality of biostatistical aspects corresponds to the primary objective. Thus, participants were asked to complete the sentence ‘In x% of the submitted study protocols, the following problem occurs’, where 12 different statistical problems were formulated. All other items assess secondary endpoints.ResultsFor all biostatistical aspects, 45 of 49 (91.8%) participants judged the quality of AMG/MPG study protocols much better than that of ‘non-regulated’ studies. The latter are in median affected 20%–60% more often by statistical problems. The highest need for training was reported for sample size calculation, missing values and multiple comparison procedures.ConclusionsBiostatisticians being active in German medical ethics committees classify the biostatistical quality of study protocols as low for ‘non-regulated’ studies, whereas quality is much better for AMG/MPG studies.

Human Physiology: A Very Short Introduction

2021 ◽  
Author(s):  
Jamie A. Davies
Keyword(s):  
Human Physiology ◽  
Medical Research ◽  
Human Body ◽  
Ethical Issues ◽  
Physiological Mechanisms ◽  
Short Introduction ◽  
Process Information ◽  
Internal Parameters ◽  
The Creation

Human Physiology: A Very Short Introduction explores how the human body works, senses, reacts, and defends itself. Physiology is the science of life. It considers how human bodies are supplied with energy, how they maintain their internal parameters, the ways in which they gather and process information or take action, and the creation of new generations. This VSI examines the experiments undertaken to understand the interplay of the vast variety of physiological mechanisms and principles within us, and analyses the ethical issues involved. It also looks at how enhanced understandings of physiological knowledge can help inform medical research and care.

Quality of urban life among older adults in the world major metropolises: a cross-cultural comparative study

2016 ◽  
Vol 38 (1) ◽  
pp. 108-128 ◽  
Author(s):  
XI PAN ◽  
JASLEEN K. CHAHAL ◽  
ROSE MARIE WARD
Keyword(s):  
Older Adults ◽  
New York ◽  
New York City ◽  
Factor Analysis ◽  
Cultural Differences ◽  
York City ◽  
Cross Cultural ◽  
Urban Life ◽  
Quality Of Urban Life

ABSTRACTThe concept of quality of urban life (QoUL) can be interpreted quite differently across different cultures. Little evidence has shown that the measure of QoUL, which is based on Western culture, can be applied to populations cross-culturally. In the current study, we use data from the 2006 Assessing Happiness and Competitiveness of World Major Metropolises study to identify underlying factors associated with QoUL as well as assess the consistency of the QoUL measurement among adults, aged 60 and older, in ten world major metropolises (i.e. New York City, Toronto, London, Paris, Milan, Berlin, Stockholm, Beijing, Tokyo and Seoul). Exploratory factor analysis and multiple-group confirmatory factor analysis (CFA) are used to analyse the data. Findings of the study suggest that the measure of QoUL is sensitive to socio-cultural differences. Community factor and intrapersonal factor are two underlying structures that are related to QoUL among older adults in ten metropolises cross-culturally. Results from the CFA indicate that Toronto is comparable with Beijing, New York City, Paris, Milan and Stockholm in QoUL, while other cities are not. The results provide insights into the development of current urban policy and promotion of quality of life among older residents in major metropolitan areas. Future researchers should continue to explore the relationship between QoUL and socio-cultural differences within international urban settings, while remaining cautious when making cross-cultural comparisons.

scholarly journals The principles of medical ethics and medical research

1999 ◽  
Vol 15 (suppl 1) ◽  
pp. S7-S13 ◽  
Author(s):  
John Harris
Keyword(s):  
Public Health ◽  
Medical Ethics ◽  
Medical Research ◽  
Late Onset ◽  
Human Subjects ◽  
Predictive Testing ◽  
Public Health Issue ◽  
Public Health Medicine ◽  
International Ethics ◽  
Ongoing Research

In this paper I discuss the application of the principles of medical ethics and of medical research to the case of children and others whose consent to treatment and to research is problematic. Public health depends substantially on the possibility of ongoing research into all conditions which affect the health of the people. Constraints on this research are therefore a public health issue. Moreover and more importantly the possibility of predictive testing and indeed of screening for health-relevant conditions is an important public health tool, and limitations on the use of this tool are of great significance to public health medicine. Having considered the particular problems created by research and predictive testing on children for late-onset conditions I go on to discuss research on those whose consent is problematic more generally. I conclude with radical recommendations for the reform of The Declaration of Helsinki and of the International Ethics Guidelines for Biomedical Research Involving Human Subjects, prepared by the Council for International Organizations of Medical Sciences (CIOMS).

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