Articles

Early-career researchers’ views on ethical dimensions of patient engagement in research

Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relativel...

Authors: Jean-Christophe Bélisle-Pipon, Geneviève Rouleau and Stanislav Birko

Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study

There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issu...

Authors: Corine Mouton Dorey, Holger Baumann and Nikola Biller-Andorno

The ethics of using placebo in randomised controlled trials: a case study of a Plasmodium vivax antirelapse trial

The use of placebos in randomised controlled trials is a subject of considerable ethical debate. In this paper we present a set of considerations to evaluate the ethics of placebo controlled trials that includ...

Authors: Phaik Yeong Cheah, Norbert Steinkamp, Lorenz von Seidlein and Ric N. Price

Leaving patients to their own devices? Smart technology, safety and therapeutic relationships

This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients w...

Authors: Anita Ho and Oliver Quick

Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012–2016)

Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbe...

Authors: Irene Tuffrey-Wijne, Leopold Curfs, Ilora Finlay and Sheila Hollins

Screening for infectious diseases of asylum seekers upon arrival: the necessity of the moral principle of reciprocity

With a large number of forcibly displaced people seeking safety, the EU is facing a challenge in maintaining solidarity. Europe has seen millions of asylum seekers crossing European borders, the largest number...

Authors: Dorien T. Beeres, Darren Cornish, Machiel Vonk, Sofanne J. Ravensbergen, Els L. M. Maeckelberghe, Pieter Boele Van Hensbroek and Ymkje Stienstra

Objectivity applied to embodied subjects in health care and social security medicine: definition of a comprehensive concept of cognitive objectivity and criteria for its application

The article defines a comprehensive concept of cognitive objectivity (CCCO) applied to embodied subjects in health care. The aims of this study were: (1) to specify some necessary conditions for the definition...

Authors: Hans Magnus Solli and António Barbosa da Silva

Ethical issues in pragmatic randomized controlled trials: a review of the recent literature identifies gaps in ethical argumentation

Pragmatic randomized controlled trials (RCTs) are designed to evaluate the effectiveness of interventions in real-world clinical conditions. However, these studies raise ethical issues for researchers and regu...

Authors: Cory E. Goldstein, Charles Weijer, Jamie C. Brehaut, Dean A. Fergusson, Jeremy M. Grimshaw, Austin R. Horn and Monica Taljaard

Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa

Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recogniti...

Authors: Ciara Staunton, Paulina Tindana, Melany Hendricks and Keymanthri Moodley

Matters to address prior to introducing new life support technology in Japan: three serious ethical concerns related to the use of left ventricular assist devices as destination therapy and suggested policies to deal with them

Destination therapy (DT) is the permanent implantation of a left ventricular assist device (LVAD) in patients with end-stage, severe heart failure who are ineligible for heart transplantation. DT improves both...

Authors: Atsushi Asai, Sakiko Masaki, Taketoshi Okita, Aya Enzo and Yasuhiro Kadooka

Ethical implications of digital communication for the patient-clinician relationship: analysis of interviews with clinicians and young adults with long term conditions (the LYNC study)

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. How...

Authors: Agnieszka Ignatowicz, Anne-Marie Slowther, Patrick Elder, Carol Bryce, Kathryn Hamilton, Caroline Huxley, Vera Forjaz, Jackie Sturt and Frances Griffiths

Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: shared or non-shared decision making? A qualitative study of the professional perspective in two moral case deliberations

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands...

Authors: Conny A. M. F. H. Span-Sluyter, Jan C. M. Lavrijsen, Evert van Leeuwen and Raymond T. C. M. Koopmans

Advance directives as a tool to respect patients’ values and preferences: discussion on the case of Alzheimer’s disease

The proposal of the new criteria for the diagnosis of Alzheimer’s disease (AD) based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment (MCI) or predementia/prodromal– stag...

Authors: Corinna Porteri

Disparate compensation policies for research related injury in an era of multinational trials: a case study of Brazil, Russia, India, China and South Africa

Compensation for research related injuries is a subject that is increasingly gaining traction in developing countries which are burgeoning destinations of multi center research. However, the existence of dispa...

Authors: George Rugare Chingarande and Keymanthri Moodley

Benefit in liver transplantation: a survey among medical staff, patients, medical students and non-medical university staff and students

The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-fir...

Authors: Christine Englschalk, Daniela Eser, Ralf J. Jox, Alexander Gerbes, Lorenz Frey, Derek A. Dubay, Martin Angele, Manfred Stangl, Bruno Meiser, Jens Werner and Markus Guba

An update on the “empirical turn” in bioethics: analysis of empirical research in nine bioethics journals

A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine...

Authors: Tenzin Wangmo, Sirin Hauri, Eloise Gennet, Evelyn Anane-Sarpong, Veerle Provoost and Bernice S. Elger

Combining value of information analysis and ethical argumentation in decisions on participation of vulnerable patients in clinical research

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy...

Authors: Gert J. van der Wilt, Janneke P. C. Grutters, Angela H. E. M. Maas and Herbert J. A. Rolden

Fake facts and alternative truths in medical research

Fake news and alternative facts have become commonplace in these so-called “post-factual times.” What about medical research - are scientific facts fake as well? Many recent disclosures have fueled the claim t...

Authors: Bjørn Hofmann

Autonomy and couples’ joint decision-making in healthcare

Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social rela...

Authors: Pauline E. Osamor and Christine Grady

“Right to recommend, wrong to require”- an empirical and philosophical study of the views among physicians and the general public on smoking cessation as a condition for surgery

In many countries, there are health care initiatives to make smokers give up smoking in the peri-operative setting. There is empirical evidence that this may improve some, but not all, operative outcomes. Howe...

Authors: Joar Björk, Niklas Juth and Niels Lynøe

Ethical aspects of diagnosis and interventions for children with Fetal Alcohol Spectrum Disorder (FASD) and their families

Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identifie...

Authors: Gert Helgesson, Göran Bertilsson, Helena Domeij, Gunilla Fahlström, Emelie Heintz, Anders Hjern, Christina Nehlin Gordh, Viviann Nordin, Jenny Rangmar, Ann-Margret Rydell, Viveka Sundelin Wahlsten and Monica Hultcrantz

Balancing the local and the universal in maintaining ethical access to a genomics biobank

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. D...

Authors: Catherine Heeney and Shona M. Kerr

The use of empirical research in bioethics: a survey of researchers in twelve European countries

The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the ‘empirical turn of bioethics’ and raised questions related to the value of e...

Authors: Tenzin Wangmo and Veerle Provoost

Participatory improvement of a template for informed consent documents in biobank research - study results and methodological reflections

For valid informed consent, it is crucial that patients or research participants fully understand all that their consent entails. Testing and revising informed consent documents with the assistance of their ad...

Authors: Sabine Bossert, Hannes Kahrass, Ulrike Heinemeyer, Jana Prokein and Daniel Strech

Ethical challenges experienced by UK military medical personnel deployed to Sierra Leone (operation GRITROCK) during the 2014–2015 Ebola outbreak: a qualitative study

As part of its response to the 2014 Ebola outbreak in west Africa, the United Kingdom (UK) government established an Ebola treatment unit in Sierra Leone, staffed by military personnel. Little is known about t...

Authors: Heather Draper and Simon Jenkins

Experiences of community members and researchers on community engagement in an Ecohealth project in South Africa and Zimbabwe

Community engagement (CE) models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still sho...

Authors: Rosemary Musesengwa and Moses J. Chimbari

The ethics of caring for hospital-dependent patients

Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not...

Authors: Calvin Sung and Jennifer L. Herbst

Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study

The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The ob...

Authors: Carlo Egysto Cicero-Oneto, Edith Valdez-Martinez and Miguel Bedolla

Must we remain blind to undergraduate medical ethics education in Africa? A cross-sectional study of Nigerian medical students

As the practice of medicine inevitably raises both ethical and legal issues, it had been recommended since 1999 that medical ethics and human rights be taught at every medical school. Most Nigerian medical sch...

Authors: Onochie Okoye, Daniel Nwachukwu and Ferdinand C. Maduka-Okafor

Transplant eligibility for patients with affective and psychotic disorders: a review of practices and a call for justice

The scarcity of human organs requires the transplant community to make difficult allocation decisions. This process begins at individual medical centers, where transplant teams decide which patients to place o...

Authors: Katherine L. Cahn-Fuller and Brendan Parent

Attitudes towards assisted suicide and euthanasia among care-dependent older adults (50+) in Austria: the role of socio-demographics, religiosity, physical illness, psychological distress, and social isolation

Care-dependency constitutes an important issue with regard to the approval of end-of-life decisions, yet attitudes towards assisted suicide and euthanasia are understudied among care-dependent older adults. We...

Authors: Erwin Stolz, Hannes Mayerl, Peter Gasser-Steiner and Wolfgang Freidl

Patient-targeted Googling and social media: a cross-sectional study of senior medical students

Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling (PTG), which involves a healthcare professional...

Authors: Aaron N. Chester, Susan E. Walthert, Stephen J. Gallagher, Lynley C. Anderson and Michael L. Stitely

Informed consent for clinical treatment in low-income setting: evaluating the relationship between satisfying consent and extent of recall of consent information

Treatment informed consent aims to preserve the autonomy of patients in the clinician – patient relationship so as to ensure valid consent. An acceptable method of evaluating understanding of consent informati...

Authors: Ikenna I. Nnabugwu, Fredrick O. Ugwumba, Emeka I. Udeh, Solomon K. Anyimba and Oyiogu F. Ozoemena

Roles and responsibilities of clinical ethics committees in priority setting

Fair prioritization of healthcare resources has been on the agenda for decades, but resource allocation dilemmas in clinical practice remain challenging. Can clinical ethics committees (CECs) be of help? The a...

Authors: Morten Magelssen, Ingrid Miljeteig, Reidar Pedersen and Reidun Førde

Development and pilot testing of an informed consent video for patients with limb trauma prior to debridement surgery using a modified Delphi technique

Ensuring adequate informed consent for surgery in a trauma setting is challenging. We developed and pilot tested an educational video containing information regarding the informed consent process for surgery i...

Authors: Yen-Ko Lin, Chao-Wen Chen, Wei-Che Lee, Tsung-Ying Lin, Liang-Chi Kuo, Chia-Ju Lin, Leiyu Shi, Yin-Chun Tien and Yuan-Chia Cheng

Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa

The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two for...

Authors: Laura J. Heathfield, Sairita Maistry, Lorna J. Martin, Raj Ramesar and Jantina de Vries

Measuring inconsistency in research ethics committee review

The review of human participant research by Research Ethics Committees (RECs) or Institutional Review Boards (IRBs) is a complex multi-faceted process that cannot be reduced to an algorithm. However, this does...

Authors: Samantha Trace and Simon Erik Kolstoe

The no correlation argument: can the morality of conscientious objection be empirically supported? the Italian case

The legitimacy of conscientious objection to abortion continues to fuel heated debate in Italy. In two recent decisions, the European Committee for Social Rights underlined that conscientious objection places ...

Authors: Marco Bo, Carla Maria Zotti and Lorena Charrier

Biobanking in Israel 2016–17; expressed perceptions versus real life enrollment

As part of the preparations to establish a population-based biobank in a large Israeli health organization, we aimed to investigate through focus groups the knowledge, perceptions and attitudes of insured Isra...

Authors: Gideon Koren, Daniella Beller, Daphna Laifenfeld, Iris Grossman and Varda Shalev

Gender and age disparity in the initiation of life-supporting treatments: a population-based cohort study

The relationships between age and the life-supporting treatments use, and between gender and the life-supporting treatments use are still controversial. Using extracorporeal membrane oxygenation as an example ...

Authors: Peng-Sheng Ting, Likwang Chen, Wei-Chih Yang, Tien-Shang Huang, Chau-Chung Wu and Yen-Yuan Chen

The strange case of Mr. H. Starting dialysis at 90 years of age: clinical choices impact on ethical decisions

Starting dialysis at an advanced age is a clinical challenge and an ethical dilemma. The advantages of starting dialysis at “extreme” ages are questionable as high dialysis-related morbidity induces a reflecti...

Authors: Giorgina Barbara Piccoli, Andreea Corina Sofronie and Jean-Philippe Coindre

Ethical aspects of brain computer interfaces: a scoping review

Brain-Computer Interface (BCI) is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, suc...

Authors: Sasha Burwell, Matthew Sample and Eric Racine

The emergence of ethical issues in the provision of online sexual health outreach for gay, bisexual, two-spirit and other men who have sex with men: perspectives of online outreach workers

Mobile applications and socio-sexual networking websites are used by outreach workers to respond synchronously to questions and provide information, resources, and referrals on sexual health and STI/HIV preven...

Authors: Sophia Fantus, Rusty Souleymanov, Nathan J. Lachowsky and David J. Brennan

This moral coil: a cross-sectional survey of Canadian medical student attitudes toward medical assistance in dying

In February, 2015, the Supreme Court of Canada struck down the ban on medical assistance in dying (MAiD). In June, 2016, the federal government passed Bill C-14, permitting MAiD. Current medical students will ...

Authors: Eli Xavier Bator, Bethany Philpott and Andrew Paul Costa

Collaborative partnership and the social value of clinical research: a qualitative secondary analysis

Protecting human subjects from being exploited is one of the main ethical challenges for clinical research. However, there is also a responsibility to protect and respect the communities who are hosting the re...

Authors: Sanna-Maria Nurmi, Arja Halkoaho, Mari Kangasniemi and Anna-Maija Pietilä

Limits to human enhancement: nature, disease, therapy or betterment?

New technologies facilitate the enhancement of a wide range of human dispositions, capacities, or abilities. While it is argued that we need to set limits to human enhancement, it is unclear where we should fi...

Authors: Bjørn Hofmann

What is a good health check? An interview study of health check providers’ views and practices

Health checks identify (risk factors for) disease in people without symptoms. They may be offered by the government through population screenings and by other providers to individual users as ‘personal health ...

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

Descriptive study of association between quality of care and empathy and burnout in primary care

The doctor-patient relationship is a crucial aspect of primary-care practice Research on associations between quality of care provision and burnout and empathy in a primary care setting could improve this rela...

Authors: Oriol Yuguero, Josep Ramon Marsal, Miquel Buti, Montserrat Esquerda and Jorge Soler-González

Informed consent and registry-based research - the case of the Danish circumcision registry

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 ...

Authors: Thomas Ploug and Søren Holm

Erratum to: The Liverpool Care Pathway: discarded in cancer patients but good enough for dying nursing home patients? A systematic review

Authors: Bettina S. Husebo, Elisabeth Flo and Knut Engedal