Issue 17(3)

Issue 17(3)

Journal of Bioethical Inquiry, Volume 17, Issue 3, September 2020

Image: melissa ricquier / FreeImages


Michael Ashby

Free Access No Man (or Woman) Is an Island?

No man is an island entire of itself; every man

is a piece of the continent, a part of the main;

if a clod be washed away by the sea, Europe

is the less, as well as if a promontory were, as

well as any manner of thy friends or of thine

own were; any man’s death diminishes me,

because I am involved in mankind.

And therefore never send to know for whom

the bell tolls; it tolls for thee.

MEDITATION XVII Devotions upon Emergent Occasions. John Donne (1572-1631)

Ignoring gender and geographical references of its time, these famous words by the English metaphysical poet echo through our times and several of the papers in this issue. In this era marked so heavily in every corner of the world by the COVID-19 pandemic, with nearly 25 million cases and 900,000 deaths, it is all too easy to be overwhelmed by the magnitude of death and disease related suffering that mask the myriad individual journeys of grief, loss, and unaccompanied death. To the fact of death on this scale, is added the anguish of potential avoidability, dying by oneself away from family and friends, and a small funeral or none at all. Apart from showing its empathy and concern, all a journal can do is write: “a writer always writes.” The next edition of Journal of Bioethical Inquiry will be dedicated to the pandemic (Volume 17(4) forthcoming; articles currently available at

Recent Developments

Olga C. Pandos

DIY Genetic Tests: A Product of Fact or Fallacy?

Commercialization of DNA is the new norm of biological enterprise. Our genetic material underpins our notions of self and well-being and, most importantly, our risk for disease. DNA holds the information necessary to quantitatively determine predispositions to disease and the likelihood of that disease occurring. Although do-it-yourself (DIY) genetic tests have introduced a new dimension to genetic screening, the ethical concerns are telling. Issues relating to genetic misinformation through misleading advertisement are significant problems in the context of DIY genetic tests. This article will examine the increasing concern surrounding misleading information to highlight the need for better regulation and education about genetics.

Original Research

Will Schupmann, Leila Jamal & Benjamin E. Berkman

Re-examining the Ethics of Genetic Counselling in the Genomic Era

Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear guidance about how best to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field’s preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy.

Original Research

Zanhua Zhang & Xiaoyan Min

The Ethical Dilemma of Truth-Telling in Healthcare in China

Truth-telling is often regarded as a challenge in Chinese medical practices given the amount of clinical and ethical controversies it may raise. This study sets to collect and synthesize relevant ethical evidence of the current situation in mainland China, thereby providing corresponding guidance for medical practices. This study looks into the ethical issues on the basis of the philosophy of deontology and utilitarianism and the ethical principles of veracity, autonomy, beneficence, and nonmaleficence. Chinese philosophy, context and culture are also discussed to provide some suggestions for decision-making about disclosure in a medical setting. This study holds that, in order to respect the basic rights to which critically ill patients are entitled, decisions regarding truth-telling and their implementation should be carried out with thorough consideration, which can be achieved by critical thinking, well-developed and effective communication skills, the consideration of cultural context, an understanding of individual differences, and compliance with relevant laws and regulations.

Original Research

Jeremy Davis & Eric Mathison

The Case for an Autonomy-Centred View of Physician-Assisted Death

Most people who defend physician-assisted death (PAD) endorse the Joint View, which holds that two conditions—autonomy and welfare—must be satisfied for PAD to be justified. In this paper, we defend an Autonomy Only view. We argue that the welfare condition is either otiose on the most plausible account of the autonomy condition or else is implausibly restrictive, particularly once we account for the broad range of reasons patients cite for desiring PAD, such as “tired of life” cases. Moreover, many of the common objections to an autonomy only view fail once we understand the extent of the autonomy condition’s requirements—in particular, the importance of one’s values for autonomous choices. If our view is correct, then the scope of permissible PAD is broader than is currently accepted in both the philosophical literature and the law and therefore poses an important challenge to the current consensus on justified PAD.

Original Research

Andreas Albertsen

If the Price is Right: The Ethics and Efficiency of Market Solutions to the Organ Shortage

Due to the shortage of organs, it has been proposed that the ban on organ sales is lifted and a market-based procurement system introduced. This paper assesses four prominent proposals for how such a market could be arranged: unregulated current market, regulated current market, payment-for-consent futures market, and the family-reward futures market. These are assessed in terms of how applicable prominent concerns with organ sales are for each model. The concerns evaluated are that organ markets will crowd out altruistic donation, that consent to sell organs is invalid, that sellers will be harmed, and that commodification of organs will affect human relationships in a negative way. The paper concludes that the family-reward futures market fares best in this comparison but also that it provides the weakest incentive to potential buyers. There is an inverse relationship between how applicable prominent critiques are to organ market models and the increase in available organs they can be expected to provide.

Original Research

James B. Gould

Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability

In this paper I argue that selective abortion for disability often involves inadequate counselling on the part of reproductive medicine professionals who advise prospective parents. I claim that prenatal disability clinicians often fail in intellectual duty—they are culpably ignorant about intellectual disability (or do not disclose known facts to parents). First, I explain why a standard motivation for selective abortion is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpable ignorance as the best explanation of inadequate disability counselling. Fifth, I rebut alternative explanations. My focus is pregnancies diagnosed with mild or moderate intellectual disability.

Original Research

Sara K. Kolmes & Kyle R. Boerstler

Is There a Gender Self-Advocacy Gap? An Empiric Investigation Into the Gender Pain Gap

There are documented differences in the efficacy of medical treatment for pain for men and women. Women are less likely to have their pain controlled and receive less treatment than men. We are investigating one possible explanation for this gender pain gap: that there is a difference in how women and men report their pain to physicians, and so there is a difference in how physicians understand their pain. This paper describes an exploratory study into gendered attitudes towards reporting uncontrolled pain to a physician. This exploratory study provided subjects with a vignette describing a situation in which their pain is not being treated adequately and asked them questions about their attitudes towards self-advocacy and the strategies they would likely use to express themselves. We found that women scored higher than men on measures of patient likelihood to self-advocate. Women also reported intending to use more varied self-advocacy strategies than men. This suggests it is unlikely that patient’s communication styles are to blame for the gender pain gap.

Original Research

Benjamín Herreros, María José Monforte, Julia Molina, María Velasco, Karmele Olaciregui Dague & Emanuele Valenti

The Use of Advance Directives in Specialized Care Units: A Focus Group Study With Healthcare Professionals in Madrid

Eight focus groups were conducted in four public hospitals in Madrid to explore healthcare professionals’ perceptions of advance directives (ADs) in order to improve the understanding of their lack of success among physicians and patients. A purposive sample of sixty healthcare professionals discussed ADs and reasons for their infrequent use. Three main themes were identified: perceptions about their meaning, appraisals of their use in clinical practice, and decision-making about them. Healthcare professionals perceived a lack of clarity about their definition and implementation. There is insufficient awareness of their efficacy in improving the quality of clinical relationships and decision-making, and they are often perceived only as a bureaucratic procedure. Advance directives are not integrated in the clinical practice of Madrid’s healthcare specialist services because their application is exceedingly complex, because of insufficient education about them (for both professionals and citizens), and because of lack of procedural clarity. Consequently, healthcare professionals are not aware of how ADs could improve clinical decision-making, of when and for whom their use is appropriate, and of who has responsibility for providing ADs-related information to patients. These circumstances contribute to patients’ lack of interest in completing these documents and to physicians’ sceptical views about their usefulness.

Original Research

Eliana Close; Ben P. White; Lindy Willmott

Balancing Patient and Societal Interests in Decisions About Potentially Life-Sustaining Treatment: An Australian Policy Analysis

Background This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources. Methods All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation. Results Four resource-related themes were identified: (1) doctors’ ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment. Conclusion Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors’ duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment.

OpenAccess Original Research

Ben Davies & Julian Savulescu

From Sufficient Health to Sufficient Responsibility

The idea of using responsibility in the allocation of healthcare resources has been criticized for, among other things, too readily abandoning people who are responsible for being very badly off. One response to this problem is that while responsibility can play a role in resource allocation, it cannot do so if it will leave those who are responsible below a “sufficiency” threshold. This paper considers first whether a view can be both distinctively sufficientarian and allow responsibility to play a role even for those who will be left with very poor health. It then draws several further distinctions that may affect the application of responsibility at this level. We conclude that a more plausible version of the sufficientarian view is to allow a role for responsibility where failure to do so will leave someone else who is not responsible below the sufficiency threshold. However, we suggest that individuals must exhibit “sufficient responsibility” in order for this to apply, involving both a sufficient level of control and an avoidable failure to respond adequately to reasons for action.

Original Research

Nicolae Morar and Joshua August Skorburg (co-first authors)

Why We Never Eat Alone: The Overlooked Role of Microbes and Partners in Obesity Debates in Bioethics

Debates about obesity in bioethics tend to unfold in predictable epicycles between individual choices and behaviours (e.g., restraint, diet, exercise) and the oppressive socio-economic structures constraining them (e.g., food deserts, advertising). Here, we argue that recent work from two cutting-edge research programmes in microbiology and social psychology can advance this conceptual stalemate in the literature. We begin in section 1 by discussing two promising lines of obesity research involving the human microbiome and relationship partners. Then, in section 2, we show how this research has made viable novel strategies for fighting obesity, including microbial therapies and dyad-level interventions. Finally, in section 3, we consider objections to our account and conclude by arguing that attention to the most immediate features of our biological and social environment offers a middle ground solution, while also raising important new issues for bioethicists.

Book Review

Paul A. Komesaroff

John Wiltshire, Frances Burney and the doctors: Patient narratives, then and now (United Kingdom: Cambridge University Press, 2019)

This review essay examines the emergence of the patient narrative or “pathography” in the late eighteenth and early nineteenth century in relation to the great cultural, epistemological, and ethical transformations that enabled the formation of modern medicine. John Wiltshire’s book provides an historical overview of this complex process, as well as laying the basis for a contemporary critique of some of its key assumptions.