Bioethics and Literature 11(2)
Journal of Bioethical Inquiry, Volume 11, Number 2 (June 2014)
Guest Editors: Grant Gillett and Lynne Bowyer
Michael A. Ashby and Leigh E. Rich
Letters to the Editor
Letitia Helen Burridge
Post-Approval Monitoring and Oversight of U.S.-Initiated Human Subjects Research in Resource-Constrained Countries
Brandon Brown, Janni Kinsler, Morenike O. Folayan, Karen Allen, and Carlos F. Cáceres
Hamid Reza Salehi
Grant Gillett and Lynne Bowyer
A brief introduction to this symposium on Bioethics and Literature.
One of “Five Pieces.”
Kazuo Ishiguro’s book Never Let Me Go is a thoughtful and provocative exploration of what it means to be human. Drawing on insights from the hermeneutic-phenomenology of Martin Heidegger, I argue that the movement of Ishiguro’s story can be understood in terms of actualising the human potential for autonomous action. Liberal theories take autonomy to be concerned with analytically and ethically isolatable social units directing their lives in accordance with self-interested preferences, arrived at by means of rational calculation. However, I argue that such theories are simplistic abstractions from our human-life world, distorting the fundamental embodied, embedded, and relational nature of autonomy. When we attend closely to our concrete, lived existence we see instead that autonomy is about responding appropriately to others with whom we share a world. As we follow the path of Ishiguro’s central character Kathy H., we are shown how an awareness and acceptance of our existential finitude as precarious and fallible creatures is necessary for guiding such appropriate interactions. As Kathy grows and is affirmed into her life-world, which grounds and supports her Being, she moves from heteronomy to autonomy; from being moved by external laws to embodying those laws, thereby becoming autonomous. This is exemplified by her appropriation of the carer role, through which she responds in a fitting way to those with whom she shares her world, bearing the weight of and dwelling responsibly within our human condition.
Two of “Five Pieces.”
Simon Thomas Walker
In this essay I discuss a passage from William Styron’s memoir of his long struggle with chronic severe depression, from the standpoint of a Spinozian understanding of agency and self-worth. In this passage Styron relates how in hearing a piece of music he was abruptly struck by a recollection of “all the joys [his] house had known” and how this brought a realization that it would be wrong for him to kill himself: wrong because it would be an abandonment of those who had shared in those joys and a “desecration” of himself. He tells how this realization led him to admit himself to hospital for treatment and thereby to a slow and difficult recovery. This, I propose, illustrates the Spinozian idea that the value of an individual life is properly understood in terms of that individual’s participation in the actualization of a shared value and that individual agency is empowered by the knowledge of such value.
Three of “Five Pieces.”
In two of his great poems, “Ambulances” and “The Building,” Philip Larkin considers a deep fear about human individuality. The fear is that the human self is contingent and disjunctive, lacking any integrity or unity. The arrival of an ambulance on an urban curb and a visit to the hospital are the occasion of reflection on this form of human fragility. But more significant, the ambulance and the hospital are imagined as contexts in which the contingency of the human individual is brought out and laid before us.
Four of “Five Pieces.”
Grant Gillett and Robin Hankey
Euripides’ Alcestis (1959) raises the issue of ethical duties within families and exposes the romantic postures and rhetoric that can dominate such discussions. Should anybody be asked to sacrifice themselves or even undergo significant health risks for members of their own family? (An issue that is also relevant in considering our duties to future generations in terms of the earth we leave to them.) The issue that is dramatized to a heroic level in Alcestis arises in live organ and tissue donation within a family and challenges the idea that families should be trusted to sort out solutions that they can all live with. Alcestis intensifies the debate because the sacrifice of one life for another is its topic but, in doing so, it exposes many traps lying in wait for ethicists and medical jurists who boldly enter such debates (where emotions create shifting ground on which angels fear to tread).
Five of “Five Pieces.”
Flora Huang and Grant Gillett
The embodied human subject is dynamically connected to his or her historico-sociocultural context, the soil from which a person’s psyche is nourished as multiplex meanings are absorbed and enable personal development. In each culture certain towering artistic works embody this perspective. The Dream of the Red Chamber introduces Jia Bao-yu—a scion of the prestigious Jia family—and his relationships with a large cast of characters. Bao-yu is controversial but, at the time of the family’s tragic collapse, he can be seen as embodying a spiritual struggle in which his instinct, nature, sensitivity, and creativity are grounded in his transcendent relationship with a fragment of the world stone, an eternal source of energy and creativity. We are invited to draw on a metaphysical level of thought to consider his struggles with man-made hierarchies and a situated historico-sociocultural order in such a way as to live out his spiritual being. As such, the novel is closely relevant to questions of spirituality in bioethics. Through personal experiences, passions, creativity, and relationships with others, the body is inscribed, forming the soul, which may be misconstrued (for instance, through a medical or Cartesian reformulation of events) but which can be seen as the site of ethical and spiritual thought.
Katrina A. Bramstedt
A poem about academic publishing.
James Lindemann Nelson
In her final fragmentary novel Sanditon, Jane Austen develops a theme that pervades her work from her juvenilia onward: illness, and in particular, illness imagined, invented, or self-inflicted. While the “invention of odd complaints” is characteristically a token of folly or weakness throughout her writing, in this last work imagined illness is also both a symbol and a cause of how selves and societies degenerate. In the shifting world of Sanditon, hypochondria is the lubricant for a society bent on turning health into a commodity. As a result, people’s rationality and their moral character come under attack. Catherine Belling’s recent subtle study, A Condition of Doubt: The Meanings of Hypochondria, unveils hypochondria’s discursive and cultural character. Running sharply against the tenor of Austen’s treatment, however, she argues in defense of the rationality of hypochondriacs; the notion that the condition may involve morally significant defects is not entertained; any connection to the commercialization of health care is muted. Here, I contrast Austen’s morally and epistemically negative rendering of her hypochondriacal characters in Sanditon with Belling’s efforts to create a sympathetic understanding of people with hypochondria. I will argue that, despite time gaps and genre differences, joint consideration of these texts can help bioethicists better appreciate how medicine can intensify, pathologize, and exploit anxieties about illness and death, thus adding to the challenges of living well in the face of mortality and morbidity.
For some decades, the concept of human dignity has been widely discussed in bioethical literature. Some authors think that this concept is central to questions of respect for human beings, whereas others are very critical of it. It should be noted that, in these debates, dignity is one component of a long-lasting and widespread conceptual construct used to support a stance on the ethical question of the moral status of an action or being. This construct has been used from Modernity onward to condemn slavery and torture as violations of human dignity. In spelling it out, we can come to a better understanding of what “dignity” means and become aware that there exists a quite useful place for this notion in our ethical thought, albeit a modest one.
The changing context of medical practice—bureaucratic, political, or economic—demands that doctors have the knowledge and skills to face these new realities. Such changes impose obstacles on doctors delivering ethical care to vulnerable patient populations. Modern medical ethics education requires a focus upon the knowledge and skills necessary to close the gap between the theory and practice of ethical care. Physicians and doctors-in-training must learn to be morally sensitive to ethical dilemmas on the wards, learn how to make professionally grounded decisions with their patients and other medical providers, and develop the leadership, dedication, and courage to fulfill ethical values in the face of disincentives and bureaucratic challenges. A new core focus of medical ethics education must turn to learning how to put ethics into practice by teaching physicians to realistically negotiate the new institutional maze of 21st-century medicine.
Scott J. Fitzpatrick
Contemporary approaches to the study of suicide tend to examine suicide as a medical or public health problem rather than a moral problem, avoiding the kinds of judgements that have historically characterised discussions of the phenomenon. But morality entails more than judgement about action or behaviour, and our understanding of suicide can be enhanced by attending to its cultural, social, and linguistic connotations. In this work, I offer a theoretical reconstruction of suicide as a form of moral experience that delineates five distinct, yet interrelated domains of understanding: the temporal, the relational, the existential, the ontological, and the linguistic. Attention to each of these domains, I argue, not only enriches our understanding of the moral realm but also provides a heuristic for examining the moral traditions and practices that constitute contemporary understandings of suicide.
Power and Control in Interactions Between Journalists and Health-Related Industries: The View From Industry
Bronwen Morrell, Wendy L. Lipworth, Rowena Forsyth, Christopher F.C. Jordens, and Ian Kerridge
The mass media is a major source of health information for the public, and as such the quality and independence of health news reporting is an important concern. Concerns have been expressed that journalists reporting on health are increasingly dependent on their sources—including representatives of industries responsible for manufacturing health-related products—for story ideas and content. Many critics perceive an imbalance of power between journalists and industry sources, with industry being in a position of relative power, however the empirical evidence to support this view is limited. The analysis presented here—which is part of a larger study of industry-journalist relationships—draws on in-depth, semi-structured interviews with representatives of health-related industries in Australia to inductively examine their perceptions of power relations between industry and journalists. Participants painted a picture in which journalists, rather than themselves, were in a position to control the nature, extent, and outcome of their interactions with industry sources. Our results resonate with the concept of “mediatisation” as it has been applied in the domain of political reporting. It appears that, from the perspective of industry representatives, the imposition of media logic on health-related industries may inappropriately influence the information that the public receives about health-related products.
Kimberly J. Leighton
An increasing number of children are adopted in the United States from countries where both medical care and environmental conditions are extremely poor. In response to worries about the accuracy of medical histories, prospective adoptive parents increasingly request genetic testing of children prior to adoption. Though a general consensus on the ethics of pre-adoption genetic testing (PAGT) argues against permitting genetic testing on children available for adoption that is not also permitted for children in general, a view gaining traction argues for expanding the tests permitted. The reasoning behind this view is that the State has a duty to provide a child with parents who are the best “match,” and thus all information that advances this end should be obtained. While the matching argument aims to promote the best interests of children, I show how it rests on the claim that what is in the best interests of children available for adoption is for prospective adoptive parents to have their genetic preferences satisfied such that the “genetics” of the children they end up adopting accurately reflects those preferences. Instead of protecting a vulnerable population, I conclude, PAGT contributes to the risks of harm such children face as it encourages people with strong genetic preferences to adopt children whose genetic backgrounds will always be uncertain.
Katrina A. Bramstedt
Justin T. Denholm and Ian H. Kerridge
Janet Crowden and Andrew Crowden