Articles

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well wi...

Authors: Carlos Gómez-Vírseda, Yves de Maeseneer and Chris Gastmans

Egyptians' social acceptance and consenting options for posthumous organ donation; a cross sectional study

Organ donation has become one of the most effective ways to save lives and improve the quality of life for patients with end-stage organ failure. No previous studies have investigated the preferences for the d...

Authors: Ammal M. Metwally, Ghada A. Abdel-Latif, Lobna Eletreby, Ahmed Aboulghate, Amira Mohsen, Hala A. Amer, Rehan M. Saleh, Dalia M. Elmosalami, Hend I. Salama, Safaa I. Abd El Hady, Raefa R. Alam, Hanan A. Mohamed, Hanan M. Badran, Hanan E. Eltokhy, Hazem Elhariri, Thanaa Rabah…

A qualitative study on aspects of consent for genomic research in communities with low literacy

Low literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater whe...

Authors: Daima Bukini, Columba Mbekenga, Siana Nkya, Lisa Purvis, Sheryl McCurdy, Michael Parker and Julie Makani

No research for the decisionally-impaired mentally ill: a view from Montenegro

Many of the important elements of a valid informed consent – comprehension, voluntariness, and capacity – can be compromised or unmet in the context of psychiatric research. The inability to protect their own ...

Authors: Tea Dakić

Ethical arguments against coercing provider participation in MAiD (medical assistance in dying) in Ontario, Canada

It has historically been a crime in Canada to provide assistance to someone in ending their own life, however, this paradigm was inverted in 2015 when the Supreme Court of Canada (SCC) ruled that restrictions ...

Authors: Travis Carpenter and Lucas Vivas

Exploring the evolution of a dental code of ethics: a critical discourse analysis

What can the analysis of the evolution of a code of ethics tell us about the dental profession and the association that develops it? The establishment of codes of ethics are foundational events in the social h...

Authors: Alexander C. L. Holden

Perceptions of plagiarism by biomedical researchers: an online survey in Europe and China

Plagiarism is considered as serious research misconduct, together with data fabrication and falsification. However, little is known about biomedical researchers’ views on plagiarism. Moreover, it has been argu...

Authors: Nannan Yi, Benoit Nemery and Kris Dierickx

Self-evaluated ethical competence of a practicing physiotherapist: a national study in Finland

Patients have the right to equal, respectful treatment. Nowadays, one third of patient complaints concern health care staff’s behavior towards patients. Ethically safe care requires ethical competence, which h...

Authors: Kati KULJU, Riitta SUHONEN, Pauli PUUKKA, Anna TOLVANEN and Helena LEINO-KILPI

Medical and midwifery students’ views on the use of conscientious objection in abortion care, following legal reform in Chile: a cross-sectional study

In August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman’s life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated us...

Authors: M. Antonia Biggs, Lidia Casas, Alejandra Ramm, C. Finley Baba and Sara P. Correa

What passive euthanasia is

Euthanasia can be thought of as being either active or passive; but the precise definition of “passive euthanasia” is not always clear. Though all passive euthanasia involves the withholding of life-sustaining...

Authors: Iain Brassington

Prioritising access to pandemic influenza vaccine: a review of the ethics literature

The world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need so...

Authors: Jane H. Williams and Angus Dawson

Knowledge and attitudes of physicians toward research ethics and scientific misconduct in Lebanon

Despite the implementation of codes and declarations of medical research ethics, unethical behavior is still reported among researchers. Most of the medical faculties have included topics related to medical re...

Authors: Bilal Azakir, Hassan Mobarak, Sami Al Najjar, Azza Abou El Naga and Najlaa Mashaal

Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation

In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during th...

Authors: Rosalind McDougall and Bridget Pratt

Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey

People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this ...

Authors: Eleanor Bailey, Charlotte Mühlmann, Simon Rice, Maja Nedeljkovic, Mario Alvarez-Jimenez, Lasse Sander, Alison L. Calear, Philip J. Batterham and Jo Robinson

How do 66 European institutional review boards approve one protocol for an international prospective observational study on traumatic brain injury? Experiences from the CENTER-TBI study

The European Union (EU) aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase mul...

Authors: Marjolein Timmers, Jeroen T. J. M. van Dijck, Roel P. J. van Wijk, Valerie Legrand, Ernest van Veen, Andrew I. R. Maas, David K. Menon, Giuseppe Citerio, Nino Stocchetti and Erwin J. O. Kompanje

Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia

With the huge number of patients who suffer from chronic and incurable diseases, medical scientists continue to search for new curative methods for patients in dire need of treatment. Interest in stem cells is...

Authors: Ghiath Alahmad, Sarah Aljohani and Muath Fahmi Najjar

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patien...

Authors: Joé T. Martineau, Asma Minyaoui and Antoine Boivin

Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed

Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countr...

Authors: Zümrüt Alpinar-Sencan and Silke Schicktanz

COVID-19: where is the national ethical guidance?

Authors: Richard Huxtable

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS) and Big Data analytics – promise to improve our capacity to de...

Authors: Chris Degeling, Stacy M. Carter, Antoine M. van Oijen, Jeremy McAnulty, Vitali Sintchenko, Annette Braunack-Mayer, Trent Yarwood, Jane Johnson and Gwendolyn L. Gilbert

Autonomous decisions by couples in reproductive care

Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming p...

Authors: Amal Matar, Anna T. Höglund, Pär Segerdahl and Ulrik Kihlbom

A palliative care approach in psychiatry: clinical implications

Traditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely di...

Authors: Mattias Strand, Manne Sjöstrand and Anna Lindblad

Development and psychometric evaluation of a new tool for measuring the attitudes of patients with progressive neurological diseases to ethical aspects of end-of-life care

Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this pa...

Authors: Radka Bužgová and Radka Kozáková

Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study

Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of pri...

Authors: Latifa Adarmouch, Marwan Felaefel, Robert Wachbroit and Henry Silverman

An interprofessional cohort analysis of student interest in medical ethics education: a survey-based quantitative study

There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of gradua...

Authors: Mikalyn T. DeFoor, Yunmi Chung, Julie K. Zadinsky, Jeffrey Dowling and Richard W. Sams II

Impact of legislation and public funding on oncofertility: a survey of Canadian, French and Moroccan pediatric hematologists/oncologists

Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of...

Authors: Aliya Oulaya Affdal, Michael Grynberg, Laila Hessissen and Vardit Ravitsky

Ethical arguments concerning human-animal chimera research: a systematic review

The burgeoning field of biomedical research involving the mixture of human and animal materials has attracted significant ethical controversy. Due to the many dimensions of potential ethical conflict involved ...

Authors: Koko Kwisda, Lucie White and Dietmar Hübner

Clarifying how to deploy the public interest criterion in consent waivers for health data and tissue research

Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using second...

Authors: G. Owen Schaefer, Graeme Laurie, Sumytra Menon, Alastair V. Campbell and Teck Chuan Voo

Dishonesty and research misconduct within the medical profession

While there has been much discussion of how the scientific establishment’s culture can engender research misconduct and scientific irreproducibility, this has been discussed much less frequently with respect t...

Authors: Habib Rahman and Stephen Ankier

Developing a toolkit for engagement practice: sharing power with communities in priority-setting for global health research projects

Communities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engageme...

Authors: Bridget Pratt

Disease awareness or subtle product placement? Orphan diseases featured in the television series “House, M.D.” - a cross-sectional analysis

Approximately 7% of the general population is affected by an orphan disease, which, in the United States, is defined as affecting fewer than 1 in 1500 people. Disease awareness is often low and time-to-diagnos...

Authors: Konstantin Mechler, Juliane Rausch, William K. Mountford and Markus Ries

Is it morally permissible for general practitioners to disclose their opinion on a woman’s decision on abortion?

This paper considers ethical dilemmas arising where a patient asks their General Practitioner for advice and their personal opinion regarding whether or not to have an abortion. Patients often seek their Gener...

Authors: Lynnlette Aung and Selena Knight

A systematic review of patient access to medical records in the acute setting: practicalities, perspectives and ethical consequences

Internationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their reco...

Authors: Stephanie N. D’Costa, Isla L. Kuhn and Zoë Fritz

Structural racism in precision medicine: leaving no one behind

Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the mo...

Authors: Lester Darryl Geneviève, Andrea Martani, David Shaw, Bernice Simone Elger and Tenzin Wangmo

Still a moral dilemma: how Ethiopian professionals providing abortion come to terms with conflicting norms and demands

The Ethiopian law on abortion was liberalized in 2005. However, as a strongly religious country, the new law has remained controversial from the outset. Many abortion providers have religious allegiances, whic...

Authors: Demelash Bezabih Ewnetu, Viva Combs Thorsen, Jan Helge Solbakk and Morten Magelssen

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the e...

Authors: Hazar Haidar, Meredith Vanstone, Anne-Marie Laberge, Gilles Bibeau, Labib Ghulmiyyah and Vardit Ravitsky

Stakeholder views on the acceptability of human infection studies in Malawi

Human infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and et...

Authors: Blessings M. Kapumba, Kondwani Jambo, Jamie Rylance, Markus Gmeiner, Rodrick Sambakunsi, Michael Parker, Stephen B. Gordon and Kate Gooding

Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law

When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. Ho...

Authors: Natalia Meggiolaro, Kristine Barlow-Stewart, Kate Dunlop, Ainsley J. Newson and Jane Fleming

Data Access Committees

Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant con...

Authors: Phaik Yeong Cheah and Jan Piasecki

Why genomics researchers are sometimes morally required to hunt for secondary findings

Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grou...

Authors: Julian J. Koplin, Julian Savulescu and Danya F. Vears

Addressing harm in moral case deliberation: the views and experiences of facilitators

In healthcare practice, care providers are confronted with decisions they have to make, directly affecting patients and inevitably harmful. These decisions are tragic by nature. This study investigates the rol...

Authors: Benita Spronk, Guy Widdershoven and Hans Alma

Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study

Incidental findings (IFs) and secondary findings (SFs), being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Argumen...

Authors: Marlies Saelaert, Heidi Mertes, Tania Moerenhout, Elfride De Baere and Ignaas Devisch

Legal and ethical framework for global health information and biospecimen exchange - an international perspective

The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to s...

Authors: Lara Bernasconi, Selçuk Şen, Luca Angerame, Apolo P. Balyegisawa, Damien Hong Yew Hui, Maximilian Hotter, Chung Y. Hsu, Tatsuya Ito, Francisca Jörger, Wolfgang Krassnitzer, Adam T. Phillips, Rui Li, Louise Stockley, Fabian Tay, Charlotte von Heijne Widlund, Ming Wan…

Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis

As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw d...

Authors: Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler

Important situations that capture moral distress in paediatric oncology

The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resultin...

Authors: Margareta af Sandeberg, Cecilia Bartholdson and Pernilla Pergert

Refusals to perform ritual circumcision: a qualitative study of doctors’ professional and ethical reasoning

Ritual circumcision of infant boys is controversial in Norway, as in many other countries. The procedure became a part of Norwegian public health services in 2015. A new law opened for conscientious objection ...

Authors: Liv Astrid Litleskare, Mette Tolås Strander, Reidun Førde and Morten Magelssen

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid con...

Authors: Jennifer Ilo Van Nuil, Thi Thanh Thuy Nguyen, Thanh Nhan Le Nguyen, Van Vinh Chau Nguyen, Mary Chambers, Thi Dieu Ngan Ta, Laura Merson, Thi Phuong Dung Nguyen, Minh Tu Van Hoang, Michael Parker, Susan Bull and Evelyne Kestelyn

Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects

Digital Pills (DP) are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patien...

Authors: Andrea Martani, Lester Darryl Geneviève, Christopher Poppe, Carlo Casonato and Tenzin Wangmo

What is it like to use a BCI? – insights from an interview study with brain-computer interface users

The neurotechnology behind brain-computer interfaces (BCIs) raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability...

Authors: Johannes Kögel, Ralf J. Jox and Orsolya Friedrich

Informed consent procedure in a double blind randomized anthelminthic trial on Pemba Island, Tanzania: do pamphlet and information session increase caregivers knowledge?

In clinical research, obtaining informed consent from participants is an ethical and legal requirement. Conveying the information concerning the study can be done using multiple methods yet this step commonly ...

Authors: Marta S. Palmeirim, Amanda Ross, Brigit Obrist, Ulfat A. Mohammed, Shaali M. Ame, Said M. Ali and Jennifer Keiser