Journal of Bioethical Inquiry, Volume 9, Number 1 (March 2012)
Guest Editors: Catherine Waldby, Ian Kerridge, and Loane Skene

Editorials

Rethinking the Body and Its Boundaries

Leigh E. Rich, Michael A. Ashby, and Pierre-Olivier Méthot

Recent Developments

Sale of Sperm, Health Records, Minimally Conscious States, and Duties of Candour

Cameron Stewart, Bernadette Richards, Richard Huxtable, Bill Madden, and Tina Cockburn

Symposium

Multidisciplinary Perspectives on the Donation of Stem Cells and Reproductive Tissue

Catherine Waldby, Ian Kerridge, and Loane Skene

Donating Embryos to Stem Cell Research

Jackie Leach Scully, Erica Haimes, Anika Mitzkat, Rouven Porz, and Christoph Rehmann-Sutter
This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface.

Informed Consent and Fresh Egg Donation for Stem Cell Research

Katherine Carroll and Catherine Waldby
This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients’ embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment.

“Good Mothering” or “Good Citizenship”?

Maree Porter, Ian H. Kerridge, and Christopher F. C. Jordens
Umbilical cord blood banking is one of many biomedical innovations that confront pregnant women with new choices about what they should do to secure their own and their child’s best interests. Many mothers can now choose to donate their baby’s umbilical cord blood (UCB) to a public cord blood bank or pay to store it in a private cord blood bank. Donation to a public bank is widely regarded as an altruistic act of civic responsibility. Paying to store UCB may be regarded as a “unique opportunity” to provide “insurance” for the child’s future. This paper reports findings from a survey of Australian women that investigated the decision to either donate or store UCB. We conclude that mothers are faced with competing discourses that force them to choose between being a “good mother” and fulfilling their role as a “good citizen.” We discuss this finding with reference to the concept of value pluralism.

Regulating Consent to Organ and Embryo Donation

Ngaire Naffine and Bernadette Richards
As rational adults, we are free to elect what is (or is not) done to our bodies. However, this strong freedom does not extend to the borders of life. Control over the uses of our biological material is constrained and uncertain at law. Our article examines the legal condition of embryos and organs: how law conceptualises them and regulates their uses.

Do Embryos Have Interests?

Aaron Simmons
Are embryos deserving of moral consideration in our actions? A standard view suggests that embryos are considerable only if they have interests. One argument for embryonic interests contends that embryos are harmed by death because they are deprived of valuable future lives as adult persons. Some have challenged this argument on the grounds that embryos aren’t identical to adults: either due to the potential for embryos to twin or because we do not exist until the fetus develops consciousness. These arguments fail to show that embryos do not have future adult lives. There is a better reason to think that embryos cannot have interests; namely, because they are not capable of having desires. Others have held this view but have not sufficiently justified it. The justification lies in the fact that the capacity for desires is necessary to make sense of the normativity of interests.

Original Research

Psychiatric Ethics and a Politics of Compassion

Deborah Zion, Linda Briskman, and Bebe Loff
Australia has one of the harshest regimes for the processing of asylum seekers, people who have applied for refugee status but are still awaiting an answer. It has received sharp rebuke for its policies from international human rights bodies but continues to exercise its resolve to protect its borders from those seeking protection. One means of doing so is the detention of asylum seekers who arrive in Australia by boat. Health care providers who care for asylum seekers in these conditions experience a conflict of “dual loyalty,” whereby their role in preserving and maintaining the health of patients can run counter to their employment in detention facilities. Many psychiatrists who have worked in the detention setting engage in forms of political activism in order to change the process of seeking refuge.

Ethical Issues in New Drug Prescribing

Lindsay W. Cole, Jennifer C. Kesselheim, and Aaron S. Kesselheim
We use the format of a hypothetical case study to review issues related to pharmaceutical product approval and physician prescribing practices. In this case, a new FDA-approved drug is recommended for a patient who subsequently experiences an adverse event that may or may not be related to the prescription. This case raises a number of ethical and legal considerations physicians routinely face when deciding whether to recommend such drugs for their patients. Despite the need for ongoing observation by the regulatory apparatus, physicians should be cognizant of the limitations of the drug approval system and the post-approval prescription drug surveillance system. We discuss physicians’ ethical obligations when faced with a newly approved drug, including seeking out independent sources of learning, reporting adverse effects, and notifying patients about limitations in available knowledge about therapeutic recommendations.

Castration Anxiety

Jacob M. Appel
Chemical castration laws, such as one recently adopted in the U.S. State of Louisiana, raise challenging ethical concerns for physicians. Even if such interventions were to prove efficacious, which is far from certain, they would still raise troubling concerns regarding the degree of medical risk that may be imposed upon prisoners in the name of public safety as well as the appropriate role for physicians and other health care professionals in the administration of pharmaceuticals to competent prisoners over the inmates’ unequivocal objections. This paper argues that the concerns raised by chemical castration are grave enough that, until they are adequately addressed by policymakers, physicians ought not to participate in the process.

The Extreme Male Brain Theory of Autism and the Potential Adverse Effects for Boys and Girls with Autism

Timothy M. Krahn and Andrew Fenton
Autism, typically described as a spectrum neurodevelopmental disorder characterized by impairments in verbal ability and social reciprocity as well as obsessive or repetitious behaviours, is currently thought to markedly affect more males than females. Not surprisingly, this encourages a gendered understanding of the Autism Spectrum. Simon Baron-Cohen, a prominent authority in the field of autism research, characterizes the male brain type as biased toward systemizing. In contrast, the female brain type is understood to be biased toward empathizing. Since persons with autism are characterized as hyper-systemizers and hypo-empathizers, Baron-Cohen suggests that, whether they are male or female, most possess an “extreme male brain profile.” We argue that Baron-Cohen is misled by an unpersuasive gendering of certain capacities or aptitudes in the human population. Moreover, we suggest that this may inadvertently favour boys in diagnosing children with Autism Spectrum Disorders. If this is correct, it could also have rather serious consequences for treatment and services for girls (and women) on the Autism Spectrum.

Reviews

Eggsploitation

Leigh E. Rich

The Match: Complete Strangers, a Miracle Face Transplant, Two Lives Transformed

Katrina A. Bramstedt

Overhauling America’s Healthcare Machine: Stop the Bleeding and Save Trillions

Richard D. Lamm

Case Studies

Turning a Blind Eye Is Unreasonable, Unprofessional, and Unethical

Anthony G. Tuckett

Mandatory Reporting: Watch Your (Legal) Language

Kerry John Breen

In That Case: Ethical Challenges in End-of-Life Care for GLBTI Individuals

Colleen Cartwright