Shadows of a group of people cast onto a desert floor on a sunny day.

Issue 12(3)

Journal of Bioethical Inquiry, Volume 12, Issue 3 (September 2015)

Editorials

Thirty Years Yet Miles of the Medium-Metaphor to Go: Jon Stewart, Neil Postman, and “Understanding the Politics and Epistemology of Media”

Leigh E. Rich

Critical Perspectives

AIDS Panic in the Twenty-First Century: The Tenuous Legal Status of HIV-Positive Persons in America

Richard G. Cockerill and Lance Wahlert

Surrogacy, Compensation, and Legal Parentage: Against the Adoption Model

Liezl van Zyl and Ruth Walker

Recent Developments

Decision-Making: At the End of Life and the Provision of Pretreatment Advice

Thaddeus Mason Pope and Bernadette J. Richards

Original Research

Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics

Henk ten Have
Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged (1) distinguishing between different types of vulnerability, (2) criticizing the categorization of populations as vulnerable, and (3) questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously.

Content of Public Health Ethics Postgraduate Courses in the United States

Pablo Simón-Lorda, Inés M. Barrio-Cantalejo, and Patricia Peinado-Gorlat
This paper evaluates the content of the syllabi of postgraduate courses on public health ethics (PHE) within accredited schools and programs of public health (PH) in the United States in order to gain an awareness of the topics addressed within these courses. Methods: Data was gathered via the analysis of syllabi of courses on PHE. In 2012, information was requested by e-mail from the 48 schools and 86 PH programs accredited by the U.S. Council on Education for Public Health for 2012. The “Epidemiology and PHE Syllabi” project of the University of Miami also was consulted. A table of topics was drawn up in order to carry out content analysis of the documents. Results: Data was obtained from 25 schools (52%) and 36 accredited programs (42%); 36 syllabi were gathered and 75 different topics were found. Of these, 38 topics were addressed in six or more syllabi and can be grouped as follows: foundations of PHE; autonomy and its limits; infectious disease control; justice; research ethics; health education and promotion; environmental and occupational health; screening; genetics; privacy and confidentiality; and community-based practice and vulnerable populations. Conclusions: The analyzed syllabi show high variability in curricular content. The debate with regard to whether a core curriculum on PHE should be established is ongoing. The results of this work might be of interest for schools and programs of PH in other countries or regions of the world in order to develop or ameliorate their own PHE syllabi.

Planning for Pandemics: Lessons From the Past Decade

Belinda Bennett and Terry Carney
It is now 10 years since the disease we now know as SARS—severe acute respiratory syndrome—caused more than 700 deaths around the world and made more than 8,000 people ill. More recently, in 2009 the global community experienced the first influenza pandemic of the 21st century—the 2009 H1N1 influenza pandemic. This paper analyses the major developments in international public health law relating to infectious diseases in the period since SARS and considers their implications for pandemic planning.

Conflicts Between Parents and Health Professionals About a Child’s Medical Treatment: Using Clinical Ethics Records to Find Gaps in the Bioethics Literature

Rosalind McDougall, Lauren Notini, and Jessica Phillips
Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child’s medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being.

Conflicts in Learning to Care for Critically Ill Newborns: “It Makes Me Question My Own Morals”

Renee D. Boss, Gail Geller, and Pamela K. Donohue
Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit (NICU) is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects.

Deficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-Sustaining Treatment in Severely Disabled and Impaired Infants

Neera Bhatia and James Tibballs
This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of “best interests” but these have not yet been adopted. In particular, although courts have discounted assessment of “quality of life” as a legitimate component of determination of “best interests,” this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective.

Addressing the Concerns Surrounding Continuous Deep Sedation in Singapore and Southeast Asia: A Palliative Care Approach

Lalit Kumar Radha Krishna
The application of continuous deep sedation (CDS) in the treatment of intractable suffering at the end of life continues to be tied to a number of concerns that have negated its use in palliative care. Part of the resistance towards use of this treatment option of last resort has been the continued association of CDS with physician-associated suicide and/or euthanasia (PAS/E), which is compounded by a lack clinical guidelines and a failure to cite this treatment under the aegis of a palliative care approach. I argue that reinstituting a palliative care-inspired approach that includes a holistic review of the patient’s situation and the engagement of a multidisciplinary team (MDT) guided by clearly defined practice requirements that have been lacking amongst many prevailing guidelines will overcome prevailing objections to this practice and allow for the legitimization of this process.

Rethinking “Commercial” Surrogacy in Australia

Jenni Millbank
This article proposes reconsideration of laws prohibiting paid surrogacy in Australia in light of increasing transnational commercial surrogacy. The social science evidence base concerning domestic surrogacy in developed economies demonstrates that payment alone cannot be used to differentiate “good” surrogacy arrangements from “bad” ones. Compensated domestic surrogacy and the introduction of professional intermediaries and mechanisms such as advertising are proposed as a feasible harm-minimisation approach. I contend that Australia can learn from commercial surrogacy practices elsewhere, without replicating them.

Reproductive Ethics in Commercial Surrogacy: Decision-Making in IVF Clinics in New Delhi, India

Malene Tanderup , Sunita Reddy, Tulsi Patel, and Birgitte Bruun Nielsen
As a neo-liberal economy, India has become one of the new health tourism destinations, with commercial gestational surrogacy as an expanding market. Yet the Indian Assisted Reproductive Technology (ART) Bill has been pending for five years, and the guidelines issued by the Indian Council of Medical Research are somewhat vague and contradictory, resulting in self-regulated practices of fertility clinics. This paper broadly looks at clinical ethics in reproduction in the practice of surrogacy and decision-making in various procedures. Through empirical research in New Delhi, the capital of India, from December 2011 to November 2012, issues of decision-making on embryo transfer, fetal reduction, and mode of delivery were identified. Interviews were carried out with doctors in eighteen ART clinics, agents from four agencies, and fourteen surrogates. In aiming to fulfil the commissioning parents’ demands, doctors were willing to go to the greatest extent possible in their medical practice. Autonomy and decision-making regarding choice of the number of embryos to transfer and the mode of delivery lay neither with commissioning parents nor surrogate mothers but mostly with doctors. In order to ensure higher success rates, surrogates faced the risk of multiple pregnancy and fetal reduction with little information regarding the risks involved. In the globalized market of commercial surrogacy in India, and with clinics compromising on ethics, there is an urgent need for formulation of regulative law for the clinical practice and maintenance of principles of reproductive ethics in order to ensure that the interests of surrogate mothers are safeguarded.

Open-Identity Sperm Donation: How Does Offering Donor-Identifying Information Relate to Donor-Conceived Offspring’s Wishes and Needs?

An Ravelingien, Veerle Provoost, and Guido Pennings
Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether (and to what extent) offering access to the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived (DC) offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: (1) to avoid medical risks and consanguineous relationships; (2) to satisfy curiosity; (3) to learn more about the self or to complete one’s identity; (4) to learn more about what kind of person the donor is (biographical information, why he donated, etc.); (5) to form a relationship with the donor and/or his family; and (6) to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is (extended) contact with the donor, rather than the mere provision of his name.

Restricting Access to ART on the Basis of Criminal Record

Kara Thompson and Rosalind McDougall
As assisted reproductive technologies (ART) become increasingly popular, debate has intensified over the ethical justification for restricting access to ART based on various medical and non-medical factors. In 2010, the Australian state of Victoria enacted world-first legislation that denies access to ART for all patients with certain criminal or child protection histories. Patients and their partners are identified via a compulsory police and child protection check prior to commencing ART and, if found to have a previous relevant conviction or child protection order, are given a “presumption against treatment.” This article reviews the legislation and identifies arguments that may be used to justify restricting access to ART for various reasons. The arguments reviewed include limitations of reproductive rights, inheriting undesirable genetic traits, distributive justice, and the welfare of the future child. We show that none of these arguments justifies restricting access to ART in the context of past criminal history. We show that a “presumption against treatment” is an unjustified infringement on reproductive freedom and that it creates various inconsistencies in current social, medical, and legal policy. We argue that a state-enforced policy of restricting access to ART based on the non-medical factor of past criminal history is an example of unjust discrimination and cannot be ethically justified, with one important exception: in cases where ART treatment may be considered futile on the basis that the parents are not expected to raise the resulting child.

Case Studies

Paedophilia, Invasive Brain Surgery, and Punishment

Frederic Gilbert and Andrej Vranič

Reviews

Our Curse

Katrina A. Bramstedt

Big Eyes

Katrina A. Bramstedt