•  6
    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.
    Bioethics, EarlyView.
  •  7
    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
  •  4
    Invisible Enemies: Coronavirus and Other Hidden Threats
    Journal of Bioethical Inquiry 17 (4): 531-534. 2020.
    To say that coronavirus is highly visible is a massive understatement in terms of its omnipresence in our lives and media coverage concerning it, yet also clearly untrue in terms of the virus itself. COVID-19 is our invisible enemy, changing our lives radically without ever revealing itself directly. In this paper I explore its invisibility and how it relates to and exposes other invisible enemies we are and have been fighting, in many cases without even realizing. First, I analyse the virus its…Read more
  •  1
    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
  •  21
    Counting the cost of denying assisted dying
    with Alec Morton
    Clinical Ethics 15 (2): 65-70. 2020.
    In this paper, we propose and defend three economic arguments for permitting assisted dying. These arguments are not intended to provide a rationale for legalising assisted suicide or euthanasia in...
  •  16
    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
  •  4
    The ambivalence of human-animal-relationships culminates in our eating habits; most people disapprove of factory farming, but most animal products that are consumed come from factory farming. While psychology and sociology offer several theoretical explanations for this phenomenon our study presents an experimental approach: an attempt to challenge people’s attitude by confronting them with the animals’ perspective of the consumption process. We confronted our participants with a fictional scena…Read more
  •  10
    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.
  •  8
    Background 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. However, how researchers develop their sense of integrity is not fully understood. We examined the factors and circumstances that shape researchers’ understanding of research integrity. Methods This study draws insights from in-depth, semi-structured interviews with 33 researchers in…Read more
  •  17
    Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals abo…Read more
  •  26
    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
  •  97
    Deaf by design: Disability and impartiality
    Bioethics 22 (8): 407-413. 2008.
    In 'Benefit, Disability and the Non-Identity Problem', Hallvard Lillehammer uses the case of a couple who chose to have deaf children to argue against the view that impartial perspectives can provide an exhaustive account of the rightness and wrongness of particular reproductive choices. His conclusion is that the traditional approach to the non-identity problem leads to erroneous conclusions about the morality of creating disabled children. This paper will show that Lillehammer underestimates t…Read more
  •  19
    Pub Philosophy
    Journal of Bioethical Inquiry 16 (1): 7-12. 2019.
  •  66
    CRISPR and the Rebirth of Synthetic Biology
    with Raheleh Heidari and Bernice Simone Elger
    Science and Engineering Ethics 23 (2): 351-363. 2017.
    Emergence of novel genome engineering technologies such as clustered regularly interspaced short palindromic repeat has refocused attention on unresolved ethical complications of synthetic biology. Biosecurity concerns, deontological issues and human right aspects of genome editing have been the subject of in-depth debate; however, a lack of transparent regulatory guidelines, outdated governance codes, inefficient time-consuming clinical trial pathways and frequent misunderstanding of the scient…Read more
  •  16
    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. 2018.
    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
  •  22
    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
  • The untimely death of the UK Donation Ethics Committee
    Journal of Medical Ethics 43 (1): 63-64. 2017.
  •  37
    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
  •  178
    Justice and the Fetus: Rawls, Children, and Abortion
    Cambridge Quarterly of Healthcare Ethics 20 (1): 93-101. 2011.
    In a footnote to the first edition of Political Liberalism, John Rawls introduced an example of how public reason could deal with controversial issues. He intended this example to show that his system of political liberalism could deal with such problems by considering only political values, without the introduction of comprehensive moral doctrines. Unfortunately, Rawls chose “the troubled question of abortion” as the issue that would illustrate this. In the case of abortion, Rawls argued, “the …Read more
  •  21
    Increasing organ donation rates by revealing recipient details to families of potential donors
    with Dale Gardiner
    Journal of Medical Ethics 44 (2): 101-103. 2018.
    Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the peo…Read more
  •  9
    Gatekeepers of Reward: a Pilot Study on the Ethics of Editing and Competing Evaluations of Value
    with Bart Penders
    Journal of Academic Ethics 16 (3): 211-223. 2018.
    The reward infrastructure in science centres on publication, in which journal editors play a key role. Reward distribution hinges on value assessments performed by editors, who draw from plural value systems to judge manuscripts. This conceptual paper examines the numerous biases and other factors that affect editorial decisions. Hybrid and often conflicting value systems contribute to an infrastructure in which editors manage reward through editorial review, commissioned commentaries and review…Read more
  •  9
    Division and discord in the Clinical Trials Regulation
    with David Townend
    Journal of Medical Ethics 42 (11): 729-732. 2016.
  •  16
    A Virtuous Death: Organ Donation and Eudaimonia
    Journal of Bioethical Inquiry 14 (3): 319-321. 2017.
  •  25
    Neuroenhancing Public Health
    Journal of Medical Ethics (6): 2012-101300. 2013.
    One of the most fascinating issues in the emerging field of neuroethics is pharmaceutical cognitive enhancement (CE). The three main ethical concerns around CE were identified in a Nature commentary in 2008 as safety, coercion and fairness; debate has largely focused on the potential to help those who are cognitively disabled, and on the issue of “cosmetic neurology”, where people enhance not because of a medical need, but because they want to (as many as 25% of American students already use no…Read more
  •  43
    Crocodile tiers
    Journal of Medical Ethics 34 (8): 575. 2008.
    It is clearly unethical for the NHS to tell people that they will die sooner unless they pay for private treatment, and then to tell them that if they pay for private treatment they will have to pay the NHS for its insufficient service. This is all the more true if people in other parts of the country are receiving all the drugs they need for the same condition on the NHS. Patients who discover that the NHS care that they have paid for will not keep them alive should be able to supplement their …Read more
  •  28
    Unethical framework: Red Card for the REF
    Times Higher Education. 2012.
    Almost all academics sigh at any mention of the REF. Preparing submissions for the Research Excellence Framework takes up a lot of effort, but is important because the REF determines a department's funding allocation from a finite pot of cash. As such, it is seen as a necessary evil by most staff. However, the REF poses ethical problems in addition to the stress it causes. As it stands, the REF is exacerbating a schism between research and teaching staff, encouraging deceptive attribution of au…Read more
  •  86
    Oncologists frequently have to break bad news to patients. Although they are not normally the ones who tell patients that they have cancer, they are the ones who have to tell patients that treatment is not working, and they are almost always the ones who have to tell them that they are going to die and that nothing more can be done to cure them. Perhaps the most difficult cases are those where further treatment is almost certainly futile, but there remains an extremely slim chance of yet more ag…Read more