•  6
    The Ethics of Time: Towards Temporal Bioethics
    Journal of Bioethical Inquiry 1-6. forthcoming.
    In this paper I discuss the important yet overlooked role played by time in public health ethics, clinical ethics, and personal ethics, and present an exploratory analysis of temporal inequalities and temporal autonomy.
  •  17
    Integrating ethics in AI development: a qualitative study
    with Laura Arbelaez Ossa, Giorgia Lorenzini, Stephen R. Milford, Bernice S. Elger, and Michael Rost
    BMC Medical Ethics 25 (1): 1-11. 2024.
    Background While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns and challenges perceived by experts in developing ethical AI that addresses the he…Read more
  •  53
    Genetic Morality
    Peter Lang. 2006.
    This book will attempt to show that these and other problems are ultimately resolvable, given careful and unbiased application of established ethical principles ...
  •  11
    6. Defining Death in Donation after Circulatory Determination of Death
    with Anne Dalle Ave and James Bernat
    In Solveig Lena Hansen & Silke Schicktanz (eds.), Ethical Challenges of Organ Transplantation, Transcript Verlag. pp. 117-132. 2021.
  •  3
    In this article I argue that vagueness concerning consent to post‐mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chance…Read more
  •  7
    In the context of deceased organ donation, donors are routinely tested for HIV, to check for suitability for organ donation. This article examines whether a donor’s HIV status should be disclosed to the donor’s next of kin.On the one hand, confidentiality requires that sensitive information not be disclosed, and a duty to respect confidentiality may persist after death. On the other hand, breaching confidentiality may benefit third parties at risk of having been infected by the organ donor, as i…Read more
  •  20
    Reply to reaction on ‘Organ donation after euthanasia starting at home in a patient with multiple system atrophy – case report’
    with Najat Tajaâte, Nathalie van Dijk, Elien Pragt, A. Kempener-Deguelle, Wim de Jongh, Jan Bollen, and Walther van Mook
    BMC Medical Ethics 24 (1): 1-2. 2023.
    We would like to respond to the comment we received from our colleagues on our case report about organ donation after euthanasia starting at home. We reply to their statements on medical and legal aspects, and provide more information on our view of informed consent.
  •  21
    Autonomy and social influence in predictive genetic testing decision‐making: A qualitative interview study
    with Bettina M. Zimmermann, Insa Koné, and Bernice Elger
    Bioethics 35 (2): 199-206. 2021.
    Beauchamp and Childress’ definition of autonomous decision‐making includes the conditions of intentionality, understanding, and non‐control. In genetics, however, a relational conception of autonomy has been increasingly recognized. This article aims to empirically assess aspects of social influence in genetic testing decision‐making and to connect these with principlist and relational theories of autonomy. We interviewed 18 adult genetic counsellees without capacity issues considering predictiv…Read more
  •  41
    The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients
    with Isabelle Wienand, Milenko Rakic, and Bernice Elger
    Journal of Bioethical Inquiry 15 (2): 211-218. 2018.
    This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty ; hope as reflective…Read more
  •  21
    Defining Health Research for Development: The perspective of stakeholders from an international health research partnership in Ghana and Tanzania
    with Claire Leonie Ward, Evelyn Anane-Sarpong, Osman Sankoh, Marcel Tanner, and Bernice Elger
    Developing World Bioethics 18 (4): 331-340. 2017.
    Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included tea…Read more
  •  58
    Structural racism in precision medicine: leaving no one behind
    with Tenzin Wangmo, Bernice Simone Elger, Andrea Martani, and Lester Darryl Geneviève
    BMC Medical Ethics 21 (1): 1-13. 2020.
    Precision medicine 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 most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups. One often-neglected underlying reason why this …Read more
  •  18
    Organ donation after euthanasia starting at home in a patient with multiple system atrophy
    with Walther van Mook, Jan Bollen, Wim de Jongh, A. Kempener-Deguelle, Elien Pragt, Nathalie van Dijk, and Najat Tajaâte
    BMC Medical Ethics 22 (1): 1-6. 2021.
    BackgroundA patient who fulfils the due diligence requirements for euthanasia, and is medically suitable, is able to donate his organs after euthanasia in Belgium, the Netherlands and Canada. Since 2012, more than 70 patients have undergone this combined procedure in the Netherlands. Even though all patients who undergo euthanasia are suffering hopelessly and unbearably, some of these patients are nevertheless willing to help others in need of an organ. Organ donation after euthanasia is a so-ca…Read more
  •  12
    In this article, I describe and analyse the proposed new International Committee of Medical Journal Editors form for disclosing conflicts of interest and conclude that it has many flaws. The form does not mention ‘conflicts of interest’ even once in either its body or its title, it introduces a conceptually confused categorisation of different potential conflicts and it ignores future conflicts and intellectual biases. Finally, many of the authors of the new form have themselves failed to declar…Read more
  •  18
    This article provides a systematic analysis of the proposal to use Covid‐19 vaccination status as a criterion for admission of patients with Covid‐19 to intensive care units (ICUs) under conditions of resource scarcity. The general consensus is that it is inappropriate to use vaccination status as a criterion because doing so would be unjust; many health systems, including the UK National Health Service, are based on the principle of equality of access to care. However, the analysis reveals that…Read more
  •  31
    Using non-human primates to benefit humans: research and organ transplantation
    with Wybo Dondorp and Guido de Wert
    Medicine, Health Care and Philosophy 17 (4): 573-578. 2014.
    Emerging biotechnology may soon allow the creation of genetically human organs inside animals, with non-human primates and pigs being the best candidate species. This prospect raises the question of whether creating organs in primates in order to then transplant them into humans would be more acceptable than using them for research. In this paper, we examine the validity of the purported moral distinction between primates and other animals, and analyze the ethical acceptability of using primates…Read more
  •  19
    The Virus of Vagueness in Authorship
    Journal of Bioethical Inquiry 13 (3): 361-362. 2016.
  • The untimely death of the UK Donation Ethics Committee
    Journal of Medical Ethics 43 (1): 63-64. 2017.
  •  27
    The Trojan Citation and the “Accidental” Plagiarist
    Journal of Bioethical Inquiry 13 (1): 7-9. 2016.
  •  41
    The side effects of deemed consent: changing defaults in organ donation
    Journal of Medical Ethics 45 (7): 435-439. 2019.
    In this Current Controversy article, I describe and analyse the imminent move to a system of deemed consent for deceased organ donation in England and similar planned changes in Scotland, in light of evidence from Wales, where the system changed in 2015. Although the media has tended to focus on the potential benefits and ethical issues relating to the main change from an opt-in default to an opt-out one, other defaults will also change, while some will remain the same. Interaction of these othe…Read more
  •  63
    Many ethical issues are posed by public health interventions. Although abstract theorizing about these issues can be useful, it is the application of ethical theory to real cases which will ultimately be of benefit in decision-making. To this end, this paper will analyse the ethical issues involved in Childsmile, a national oral health demonstration programme in Scotland that aims to improve the oral health of the nation's children and reduce dental inequalities through a combination of targeted…Read more
  •  28
    The Roman Catholic Church and the Repugnant Conclusion
    Journal of Bioethical Inquiry 13 (1): 11-14. 2016.
  •  13
    The ethics of semantics in medicine
    with Alex Manara and Anne Laure Dalle Ave
    Journal of Medical Ethics 48 (12): 1026-1031. 2022.
    In this paper, we discuss the largely neglected topic of semantics in medicine and the associated ethical issues. We analyse several key medical terms from the informed perspective of the healthcare professional, the lay perspective of the patient and the patient’s family, and the descriptive perspective of what the term actually signifies objectively. The choice of a particular medical term may deliver different meanings when viewed from these differing perspectives. Consequently, several ethic…Read more
  •  12
    Much of the ethical discourse concerning the coronavirus pandemic has focused on the allocation of scarce resources, be it potentially beneficial new treatments, ventilators, intensive care beds, or oxygen. Somewhat ironically, the more important ethical issues may lie elsewhere, just as the more important medical issues do not concern intensive care or treatment for COVID‐19 patients, but rather the diversion towards these modes of care at the expense of non‐Covid patients and treatment. In thi…Read more
  •  14
    The Cost of Coronavirus Obligations: Respecting the Letter and Spirit of Lockdown Regulations
    Cambridge Quarterly of Healthcare Ethics 30 (2): 255-261. 2021.
    We all now know that the novel coronavirus is anything but a common cold. The pandemic has created many new obligations for all of us, several of which come with serious costs to our quality of life. But in some cases, the guidance and the law are open to a degree of interpretation, leaving us to decide what is the ethical course of action. Because of the high cost of some of the obligations, a conflict of interest can arise between what we want to do and what it is right to do. And so, some peo…Read more
  •  54
    In this article I argue that vagueness concerning consent to post-mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chance…Read more
  •  20
    The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene Editing
    Journal of Bioethical Inquiry 17 (1): 5-10. 2020.
    This editorial provides an ethical analysis of the consent materials and other documents relating to the recent creation and birth of twin girls who had their genes edited using CRISPR-cas9 in a controversial Chinese research study. It also examines the “draft ethical principles” published by the leader of the research study. The results of the analysis further intensify serious ethical concerns about the conduct of this study.
  •  451
    The body as unwarranted life support: a new perspective on euthanasia
    Journal of Medical Ethics 33 (9): 519-521. 2007.
    It is widely accepted in clinical ethics that removing a patient from a ventilator at the patient’s request is ethically permissible. This constitutes voluntary passive euthanasia. However, voluntary active euthanasia, such as giving a patient a lethal overdose with the intention of ending that patient’s life, is ethically proscribed, as is assisted suicide, such as providing a patient with lethal pills or a lethal infusion. Proponents of voluntary active euthanasia and assisted suicide have arg…Read more
  •  23
    In this chapter I consider the narrow and wider benefits of permitting assisted dying in the specific context of organ donation and transplantation. In addition to the commonly used arguments, there are two other neglected reasons for permitting assisted suicide and/or euthanasia: assisted dying enables those who do not wish to remain alive to prolong the lives of those who do, and also allows many more people to fulfill their wish to donate organs after death. In the first part of this chapter …Read more
  •  20
    We have a responsibility to obey COVID-19 rules, in order to minimize risk. Yet it is still seen as rude to challenge people who do not respect those rules, when in fact the opposite is true; it is rude to increase risk to others. In this paper I analyse the relationship between risk, responsibility, and rudeness by analysing the evolution of the main governmental slogans and rules and explore the complex relationship between simplicity, safety, and perceived fairness of these rules, and how the…Read more