Articles

The psychology of “cure” - unique challenges to consent processes in HIV cure research in South Africa

Consent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. HIV cure/eradication research is scientifically more complex and...

Authors: Keymanthri Moodley, Ciara Staunton, Theresa Rossouw, Malcolm de Roubaix, Zoe Duby and Donald Skinner

How to effectively obtain informed consent in trauma patients: a systematic review

Obtaining adequate informed consent from trauma patients is challenging and time-consuming. Healthcare providers must communicate complicated medical information to enable patients to make informed decisions. ...

Authors: Yen-Ko Lin, Kuan-Ting Liu, Chao-Wen Chen, Wei-Che Lee, Chia-Ju Lin, Leiyu Shi and Yin-Chun Tien

Circumcision registry promotes precise research and fosters informed parental decisions

In 2017 Ploug and Holm argued that anonymizing individuals in the Danish circumcision registry was insufficient to protect these individuals from what they regard as the potential harms of being in the registr...

Authors: Robert S. Van Howe, Morten Frisch, Peter W. Adler and J. Steven Svoboda

Illness and disease: an empirical-ethical viewpoint

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to...

Authors: Anna-Henrikje Seidlein and Sabine Salloch

Shall parent / patient wishes be fulfilled in any case? A series of 32 ethics consultations: from reproductive medicine to neonatology

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations (ECs). Respecting parent/ patient’s autonomy also means respecting the pati...

Authors: Mirella Muggli, Christian De Geyter and Stella Reiter-Theil

Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems

Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in hig...

Authors: Daniel Mbuthia, Sassy Molyneux, Maureen Njue, Salim Mwalukore and Vicki Marsh

Participants’ awareness of ethical compliance, safety and protection during participation in pharmaceutical industry clinical trials: a controlled survey

The rapid increase of industry-sponsored clinical research towards developing countries has led to potentially complex ethical issues to assess. There is scarce evidence about the perception of these participa...

Authors: Gerardo González-Saldivar, René Rodríguez-Gutiérrez, Jose Luis Viramontes-Madrid, Alejandro Salcido-Montenegro, Neri Alejandro Álvarez-Villalobos, Victoria González-Nava and José Gerardo González-González

Does written informed consent adequately inform surgical patients? A cross sectional study

Informed consent (IC) is an essential step in helping patients be aware of consequences of their treatment decisions. With surgery, it is vitally important for patients to understand the risks and benefits of ...

Authors: Erminia Agozzino, Sharon Borrelli, Mariagrazia Cancellieri, Fabiola Michela Carfora, Teresa Di Lorenzo and Francesco Attena

African bioethics: methodological doubts and insights

A trend called ‘African bioethics’ is growing on the continent due to perceptions of existing bioethics, especially guidelines for international collaborative research, as ‘ethical imperialism’. As a potential...

Authors: John Barugahare

Developing an ethics support tool for dealing with dilemmas around client autonomy based on moral case deliberations

Moral Case Deliberations (MCDs) are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support (CES), it also has limitations. 1. Lesso...

Authors: L. A. Hartman, S. Metselaar, A. C. Molewijk, H. M. Edelbroek and G. A. M. Widdershoven

Participation in a single-blinded pediatric therapeutic strategy study for juvenile idiopathic arthritis: are parents and patient-participants in equipoise?

Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials (RCT) need equipoise at least in studies with more than minima...

Authors: Petra C. E. Hissink Muller, Bahar Yildiz, Cornelia F. Allaart, Danielle M. C. Brinkman, Marion van Rossum, Lisette W. A. van Suijlekom-Smit, J. Merlijn van den Berg, Rebecca ten Cate and Martine C. de Vries

Experiences of pre-hospital emergency medical personnel in ethical decision-making: a qualitative study

Emergency care providers regularly deal with ethical dilemmas that must be addressed. In comparison with in-hospital nurses, emergency medical service (EMS) personnel are faced with more problems such as dista...

Authors: Mohammad Torabi, Fariba Borhani, Abbas Abbaszadeh and Foroozan Atashzadeh-Shoorideh

Exploring the ethics of global health research priority-setting

Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related...

Authors: Bridget Pratt, Mark Sheehan, Nicola Barsdorf and Adnan A. Hyder

Consent requirements for research with human tissue: Swiss ethics committee members disagree

In Switzerland, research with identifiable human tissue samples, and/or its accompanying data, must be approved by a research ethics committee (REC) before it can be allowed to take place. However, as the dema...

Authors: Flora Colledge, Sophie De Massougnes and Bernice Elger

A qualitative study on the voluntariness of counselling and testing for HIV amongst antenatal clinic attendees: do women have a choice?

Mother-to-child transmission (MTCT) of the Human Immunodeficiency –Virus (HIV) is a serious public health problem, contributing up to 90% of childhood HIV infections. In Tanzania, the prevention-of-mother-to-c...

Authors: Tausi S. Haruna, Evelyne Assenga and Judith Shayo

Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective

Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, appr...

Authors: Yasue Fukuda and Koji Fukuda

Stakeholder views regarding ethical issues in the design and conduct of pragmatic trials: study protocol

Randomized controlled trial (RCT) trial designs exist on an explanatory-pragmatic spectrum, depending on the degree to which a study aims to address a question of efficacy or effectiveness. As conceptualized b...

Authors: Stuart G. Nicholls, Kelly Carroll, Jamie Brehaut, Charles Weijer, Spencer Phillips Hey, Cory E. Goldstein, Merrick Zwarenstein, Ian D. Graham, Joanne E. McKenzie, Lauralyn McIntyre, Vipul Jairath, Marion K. Campbell, Jeremy M. Grimshaw, Dean A. Fergusson and Monica Taljaard

A comprehensive systematic review of stakeholder attitudes to alternatives to prospective informed consent in paediatric acute care research

A challenge of performing research in the paediatric emergency and acute care setting is obtaining valid prospective informed consent from parents. The ethical issues are complex, and it is important to consid...

Authors: Jeremy Furyk, Kris McBain-Rigg, Bronia Renison, Kerrianne Watt, Richard Franklin, Theophilus I. Emeto, Robin A. Ray, Franz E. Babl and Stuart Dalziel

Defining and categorizing outcomes of Moral Case Deliberation (MCD): concept mapping with experienced MCD participants

To support healthcare professionals in dealing with ethically difficult situations, Clinical Ethics Support (CES) services like Moral Case Deliberation (MCD) are increasingly implemented. To assess the impact ...

Authors: Janine C. de Snoo-Trimp, Bert Molewijk and Henrica C. W. de Vet

Application of the rapid ethical assessment approach to enhance the ethical conduct of longitudinal population based female cancer research in an urban setting in Ethiopia

Rapid Ethical Assessment (REA) is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited eviden...

Authors: Alem Gebremariam, Alemayehu Worku Yalew, Selamawit Hirpa, Abigiya Wondimagegnehu, Mirgissa Kaba, Mathewos Assefa, Israel Mitiku, Eva Johanna Kantelhardt, Ahmedin Jemal and Adamu Addissie

Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

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 ...

Authors: Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker and Susan Bull

Impact of moral case deliberation in healthcare settings: a literature review

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...

Authors: Maaike M. Haan, Jelle L. P. van Gurp, Simone M. Naber and A. Stef Groenewoud

Addressing vaccine hesitancy requires an ethically consistent health strategy

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 immun...

Authors: Laura Williamson and Hannah Glaab

Ethical considerations for HIV cure-related research at the end of life

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 (PL...

Authors: 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 and Davey Smith

Conscientious objection to intentional killing: an argument for toleration

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 i...

Authors: Bjørn K. Myskja and Morten Magelssen

Exploring neurologists’ perspectives on the return of next generation sequencing results to their patients: a needed step in the development of guidelines

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...

Authors: Thierry Hurlimann, Iris Jaitovich Groisman and Béatrice Godard

Attitudes to prenatal screening among Norwegian citizens: liberality, ambivalence and sensitivity

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 an...

Authors: Morten Magelssen, Berge Solberg, Magne Supphellen and Guttorm Haugen

What information and the extent of information research participants need in informed consent forms: a multi-country survey

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 ...

Authors: 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…

A bioethical framework to guide the decision-making process in the care of seriously ill patients

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 ...

Authors: Daniel Neves Forte, Fernando Kawai and Cláudio Cohen

Reuse of cardiac organs in transplantation: an ethical analysis

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...

Authors: Eisuke Nakazawa, Shoichi Maeda, Keiichiro Yamamoto, Aru Akabayashi, Yuzaburo Uetake, Margie H. Shaw, Richard A. Demme and Akira Akabayashi

Frequency of use of the religious exemption in New Jersey cases of determination of brain death

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 Juda...

Authors: Rachel Grace Son and Susan M. Setta

The values and ethical commitments of doctors engaging in macroallocation: a qualitative and evaluative analysis

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 ...

Authors: Siun Gallagher, Miles Little and Claire Hooker

Beyond ‘health and safety’ – the challenges facing students asked to work outside of their comfort, qualification level or expertise on medical elective placement

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 student...

Authors: Connie Wiskin, Jonathan Dowell and Catherine Hale

A systematic review of the literature on ethical aspects of transitional care between child- and adult-orientated health services

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...

Authors: Moli Paul, Lesley O’Hara, Priya Tah, Cathy Street, Athanasios Maras, Diane Purper Ouakil, Paramala Santosh, Giulia Signorini, Swaran Preet Singh, Helena Tuomainen and Fiona McNicholas

Setting standards for empirical bioethics research: a response to Carter and Cribb

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 resear...

Authors: Michael Dunn, Jonathan Ives, Bert Molewijk and Jan Schildmann

Debating diversity: a commentary on Standards of practice in empirical bioethics research

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 pr...

Authors: Stacy M. Carter

Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

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...

Authors: 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 and Ezra Susser

Let’s talk about standards: a commentary on standards of practice in empirical bioethics

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 s...

Authors: Alan Cribb

Standards of practice in empirical bioethics research: towards a consensus

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 p...

Authors: 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 and Guy Widdershoven

Ethics of task shifting in the health workforce: exploring the role of community health workers in HIV service delivery in low- and middle-income countries

Task shifting is increasingly used to address human resource shortages impacting HIV service delivery in low- and middle-income countries. By shifting basic tasks from higher- to lower-trained cadres, such as ...

Authors: Hayley Mundeva, Jeremy Snyder, David Paul Ngilangwa and Angela Kaida

Their view: difficulties and challenges of patients and physicians in cross-cultural encounters and a medical ethics perspective

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 ...

Authors: Kristina Würth, Wolf Langewitz, Stella Reiter-Theil and Sylvie Schuster

Management of financial conflicts of interests in clinical practice guidelines in Germany: results from the public database GuidelineWatch

The reliability of clinical practice guidelines has been disputed because guideline panel members are often burdened with financial conflicts of interest (COI). Current recommendations for COI regulation advis...

Authors: Hendrik Napierala, Luise Schäfer, Gisela Schott, Niklas Schurig and Thomas Lempert

Good health checks according to the general public; expectations and criteria: a focus group study

Health checks or health screenings identify (risk factors for) disease in people without a specific medical indication. So far, the perspective of (potential) health check users has remained underexposed in di...

Authors: Yrrah H. Stol, Eva C. A. Asscher and Maartje H. N. Schermer

Ethical competence in DNR decisions –a qualitative study of Swedish physicians and nurses working in hematology and oncology care

DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a ...

Authors: Mona Pettersson, Mariann Hedström and Anna T. Höglund

Ethical challenges assessed in the clinical ethics Committee of Psychiatry in the region of Southern Denmark in 2010–2015: a qualitative content analyses

The aim of this article is to give more insight into what ethical challenges clinicians in mental healthcare experience and discuss with a Clinical Ethics Committee in psychiatry in the Region of Southern Denm...

Authors: H. Bruun, S. G. Lystbaek, E. Stenager, L. Huniche and R. Pedersen

Ethical concerns on sharing genomic data including patients’ family members

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genom...

Authors: Kyoko Takashima, Yuichi Maru, Seiichi Mori, Hiroyuki Mano, Tetsuo Noda and Kaori Muto

Introduction to Ethics and Global Health

Authors: Beatrice Godard, Slim Haddad, Robert Huish and Daniel Weinstock

Integrated primary health care in low- and middle-income countries: a double challenge

The lack of primary healthcare integration has been identified as one of the main limits to programs’ efficacy in low- and middle-income countries. This is especially relevant to the Millennium Development Goa...

Authors: Thomas Druetz

A reflection on the challenge of protecting confidentiality of participants while disseminating research results locally

Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that w...

Authors: Anne-Marie Turcotte-Tremblay and Esther Mc Sween-Cadieux

Commodification of care and its effects on maternal health in the Noun division (West Region – Cameroon)

Since the mid-1980s, there has been a gradual ethical drift in the provision of maternal care in African health facilities in general, and in Cameroon in particular, despite government efforts. In fact, in Cam...

Authors: Ibrahim Bienvenu Mouliom Moungbakou