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...BMC Medical Ethics 2020 21:11Addressing 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...BMC Medical Ethics 2020 21:10Ethical 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...BMC Medical Ethics 2020 21:9Legal 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...BMC Medical Ethics 2020 21:8Do 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...BMC Medical Ethics 2020 21:7Important 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...BMC Medical Ethics 2020 21:6Refusals 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 ...BMC Medical Ethics 2020 21:5Researcher 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...BMC Medical Ethics 2020 21:4Digital 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...BMC Medical Ethics 2020 21:3What 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...BMC Medical Ethics 2020 21:2Informed 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 ...BMC Medical Ethics 2020 21:1Dying too soon or living too long? Withdrawing treatment from patients with prolonged disorders of consciousness after Re Y
In the ruling in Y [2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration fr...BMC Medical Ethics 2019 20:91Assessing attitudes towards medical assisted dying in Canadian family medicine residents: a cross-sectional study
Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the at...BMC Medical Ethics 2019 20:103Culture and personal influences on cardiopulmonary resuscitation- results of international survey
The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of a...BMC Medical Ethics 2019 20:102Response to Correspondence from Kolstoe and colleagues concerning our paper entitled, Research approvals iceberg: How a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better
In their letter to the Editor in this issue, Kolstoe and Carpenter challenge a core aspect of our recently published case study of research approvals [BMC Medical Ethics 20:7] by arguing that we conflate resea...BMC Medical Ethics 2019 20:101The original article was published in BMC Medical Ethics 2019 20:7The Correspondence to this article has been published in BMC Medical Ethics 2019 20:100The Correspondence to this article has been published in BMC Medical Ethics 2019 20:100Research approvals iceberg: helping it melt away
In their paper “Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better” Petrova and Barclay highlight concerns with the health research regu...BMC Medical Ethics 2019 20:100The original article was published in BMC Medical Ethics 2019 20:7The Correspondence to this article has been published in BMC Medical Ethics 2019 20:101Community perspectives on randomisation and fairness in a cluster randomised controlled trial in Zambia
One important ethical issue in randomised controlled trials (RCTs) is randomisation. Relatively little is known about how participating individuals and communities understand and perceive central aspects of ra...BMC Medical Ethics 2019 20:99Ethical concerns with the use of intelligent assistive technology: findings from a qualitative study with professional stakeholders
Advances in artificial intelligence (AI), robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care ...BMC Medical Ethics 2019 20:98Can clinical ethics committees be legitimate actors in bedside rationing?
Rationing and allocation decisions at the clinical level – bedside rationing – entail complex dilemmas that clinicians and managers often find difficult to handle. There is a lack of mechanisms and aids for pr...BMC Medical Ethics 2019 20:97When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest
Much like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years. While financial conflicts of interest (FCOI) between PAOs a...BMC Medical Ethics 2019 20:96Engaging people with lived experience in the grant review process
People with lived experience are individuals who have first-hand experience of the medical condition(s) being considered. The value of including the viewpoints of people with lived experience in health policy,...BMC Medical Ethics 2019 20:95Reporting of ethical approval and informed consent in clinical research published in leading nursing journals: a retrospective observational study
Ethical considerations play a prominent role in the protection of human subjects in clinical research. To date the disclosure of ethical protection in clinical research published in the international nursing j...BMC Medical Ethics 2019 20:94Experience of oncology residents with death: a qualitative study in Mexico
Physicians play a fundamental role in the care of patients at the end of life that includes knowing how to accompany patients, alleviate their suffering and inform them about their situation. However, in reali...BMC Medical Ethics 2019 20:93Are physicians on the same page about do-not-resuscitate? To examine individual physicians’ influence on do-not-resuscitate decision-making: a retrospective and observational study
Individual physicians and physician-associated factors may influence patients’/surrogates’ autonomous decision-making, thus influencing the practice of do-not-resuscitate (DNR) orders. The objective of this st...BMC Medical Ethics 2019 20:92Dual consent? Donors’ and recipients’ views about involvement in decision-making on the use of embryos created by gamete donation in research
Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the imp...BMC Medical Ethics 2019 20:90Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins
This paper builds on the work of Tuffrey-Wijne et al. and explores the issue of vulnerability and persons with disabilities in relation to Euthnasia and Assisted Dying (EAS). The commentary draws on both the l...BMC Medical Ethics 2019 20:89Ethical considerations in prehospital ambulance based research: qualitative interview study of expert informants
Prehospital ambulance based research has unique ethical considerations due to urgency, time limitations and the locations involved. We sought to explore these issues through interviews with experts in this res...BMC Medical Ethics 2019 20:88Vulnerability identified in clinical practice: a qualitative analysis
Although it is the moral duty of physicians to protect vulnerable patients, there are no data on how vulnerability is perceived in clinical practice. This study explores how physicians classify someone as “vul...BMC Medical Ethics 2019 20:87Mapping, framing, shaping: a framework for empirical bioethics research projects
There is growing interest in the use and incorporation of empirical data in bioethics research. Much of the recent focus has been on specific “empirical bioethics” methodologies, which attempt to integrate the...BMC Medical Ethics 2019 20:86Reprogenetics, reproductive risks and cultural awareness: what may we learn from Israeli and Croatian medical students?
Past studies emphasized the possible cultural influence on attitudes regarding reprogenetics and reproductive risks among medical students who are taken to be “future physicians.” These studies were crafted in...BMC Medical Ethics 2019 20:85Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?
Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific di...BMC Medical Ethics 2019 20:84Is selecting better than modifying? An investigation of arguments against germline gene editing as compared to preimplantation genetic diagnosis
Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gamete...BMC Medical Ethics 2019 20:83Compensation of subjects for participation in biomedical research in resource – limited settings: a discussion of practices in Malawi
Compensating participants of biomedical research is a common practice. However, its proximity with ethical concerns of coercion, undue influence, and exploitation, demand that participant compensation be regul...BMC Medical Ethics 2019 20:82How to tackle the conundrum of quality appraisal in systematic reviews of normative literature/information? Analysing the problems of three possible strategies (translation of a German paper)
In the last years, there has been an increase in publication of systematic reviews of normative (“argument-based”) literature or of normative information (such as ethical issues) in bioethics. The aim of a sys...BMC Medical Ethics 2019 20:81Analysis of official deceased organ donation data casts doubt on the credibility of China’s organ transplant reform
Since 2010 the People’s Republic of China has been engaged in an effort to reform its system of organ transplantation by developing a voluntary organ donation and allocation infrastructure. This has required a...BMC Medical Ethics 2019 20:79What do patients with unmet medical needs want? A qualitative study of patients’ views and experiences with expanded access to unapproved, investigational treatments in the Netherlands
Patients with unmet medical needs sometimes resort to non-standard treatment options, including the use of unapproved, investigational drugs in the context of clinical trials, compassionate use or named-patien...BMC Medical Ethics 2019 20:80Lessons learned from implementing a responsive quality assessment of clinical ethics support
Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics s...BMC Medical Ethics 2019 20:78Infringement of the right to surgical informed consent: negligent disclosure and its impact on patient trust in surgeons at public general hospitals – the voice of the patient
There is little dispute that the ideal moral standard for surgical informed consent calls for surgeons to carry out a disclosure dialogue with patients before they sign the informed consent form. This narrativ...BMC Medical Ethics 2019 20:77Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature
Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective...BMC Medical Ethics 2019 20:76Hospital ethics reflection groups: a learning and development resource for clinical practice
An ethics reflection group (ERG) is one of a number of ethics support services developed to better handle ethical challenges in healthcare. The aim of this article is to evaluate the significance of ERGs in ps...BMC Medical Ethics 2019 20:75Effect of written outcome information on attitude of perinatal healthcare professionals at the limit of viability: a randomized study
Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare profess...BMC Medical Ethics 2019 20:74Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributi...BMC Medical Ethics 2019 20:69Forming and implementing community advisory boards in low- and middle-income countries: a scoping review
Community advisory boards (CABs) have expanded beyond high-income countries (HICs) and play an increasing role in low- and middle-income country (LMIC) research. Much research has examined CABs in HICs, but le...BMC Medical Ethics 2019 20:73How do researchers acquire and develop notions of research integrity? A qualitative study among biomedical researchers in Switzerland
Structured training in research integrity, research ethics and responsible conduct of research is one strategy to reduce research misconduct and strengthen reliability of and trust in scientific evidence. Howe...BMC Medical Ethics 2019 20:72
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