A deaf lesbian couple who chose to have a deaf child receive a lot of criticismA deaf lesbian couple in the US deliberately tried to create a deaf child. Sharon Duchesneau and Candy McCullough hoped their child, conceived with the help of a sperm donor, would be deaf like the rest of the family. Their daughter, five year old Jehanne, is also deaf and was conceived with the same donor. News of the couple choosing to have a deaf child has (...) only been revealed with the birth of their son Gauvin.1–4To increase their chance of having a deaf baby the women sought a deaf sperm donor from a sperm bank but were told that congenital deafness is “precisely the sort of condition” that disqualifies would-be donors. Rather than dismiss the idea they found their own sperm donor by asking a deaf friend who comes from a family with five generations of deafness.1The women, both professionals in the mental health field, insist that they would still love …. (shrink)

The Kennedy Krieger lead paint study received a lot of attention after a US Court of Appeals ruled that a parent cannot consent to the participation of a child in non-therapeutic research. The ruling has raised fears that, if it goes unchallenged, valuable research might not proceed and ultimately all children would be harmed. The author discusses significant aspects of the study that have been neglected, and argues that the study was unethical because it involved injustice and its design meant (...) that the study lacked importance and value. Issues of benefit, risk, and consent are vital, but it is sometimes a mistake to consider these issues before settling questions about justice and the importance and value of a research project. The author concludes by offering a strategy for researchers and reviewers of research to appreciate, in a vivid way, the implications of research participation. (shrink)

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In (...) this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing. (shrink)

In Victoria, Australia, some parents are now able to select embryos free from genetic disease which will provide stem cells to treat an existing siblingA n Australian couple from Victoria have been given permission to use in vitro fertilisation technology to screen an embryo in order to “create a `perfect match’ sibling” for their seriously ill child. In vitro fertilisation is regulated in Victoria by the Infertility Treatment Authority which restricts access to people who are medically infertile or who have (...) a family history of genetic disease. The approval given to the Victorian couple is for a new application of IVF consisting of preimplantation genetic diagnosis together with tissue typing.The couple’s three year old daughter Christina has Fanconi’s anaemia, a rare genetic condition, that means she will die before she turns 15 unless she receives blood from the umbilical cord of a “perfect match” sibling. Some people are saying this use of IVF amounts to the creation of a genetically engineered “designer” baby. 1–6Preimplantation genetic diagnosis is an IVF technique …. (shrink)

Bioethics, Volume 36, Issue 7, Page 765-773, September 2022.

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child’s medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians’ concerns in practice: What should a clinician (...) do when he or she thinks that parents are choosing a treatment pathway that does not serve the child’s best interests? Alderson’s work, in contrast, focuses on the much broader issue of children’s role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches,... (shrink)

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery will (...) fail in its aims. In this article, we challenge, in an evidence-based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion. (shrink)

Following an investigation of the football clubs using hypoxic air machines, the Australian Football League has decided not to ban the machines. This seems, however, to be a reluctant decision since it appears that some AFL officials still feel there is something undesirable about the use of the machines. Use of the machines raises questions about performance enhancement and the role of technology. It prompts consideration of the grounds for banning performance enhancing devices or substances and raises questions about what (...) constitutes a drugA machine being used by Australian footballers, which is designed to imitate the effects of high altitude training and enhance performance has prompted an investigation by the Australian Football League and sparked debate in the media. The AFL decided not to ban the machine but a sense of unease about its use remains and there seems to be some difficulty in articulating the cause of that unease. The league’s medical officers say the hypoxicators do not contravene their antidoping code or the league’s rules,1,2 but according to at least one AFL official, the use of the machines is “sending the wrong message …. (shrink)

Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child (...) co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-... (shrink)

By looking closely at the ideas of Rosseau, Kant, and Mill, Autonomy and Patients' Decisions traces the modern concept of autonomy from its historical roots, ...

Ethics education is recognized as an integral component of health professionals’ education and has been occurring in various guises in the curricula of health professional training in many countries since at least the 1970s. However, there are a number of different aims and approaches adopted by individual educators, programs, and, importantly, different health professions that may be characterized according to strands or trends in ethics education.

When the benefits of surgery do not outweigh the harms or where they do not clearly do so, surgical interventions become morally contested. Cutting to the Core examines a number of such surgeries, including infant male circumcision and cutting the genitals of female children, the separation of conjoined twins, surgical sex assignment of intersex children and the surgical re-assignment of transsexuals, limb and face transplantation, cosmetic surgery, and placebo surgery.

The ethical value—and to some scholars, necessity—of providing trial patients with post-trial access (PTA) to an investigational drug has been subject to significant attention in the field of research ethics. Although no consensus has emerged, it seems clear that, in some trial contexts, various factors make PTA particularly appropriate. We outline the atypical aspects of psychedelic clinical trials that support the case for introducing the provision of PTA within research in this field, including the broader legal status of psychedelics, the (...) nature of the researcher-therapist/participant relationship, and the extended time-frame of the full therapeutic process. As is increasingly understood, the efficacy of psychedelic-assisted psychotherapy is driven as much by extrapharmacological elements and the cultural therapeutic container as by the drug itself. As such, we also advocate for a refocusing of attention from post-trial access to a broader concept encompassing other elements of post-trial care. We provide an overview of some of the potential post-trial care provisions that may be appropriate in psychedelic clinical trials. Although the World Medical Association’s Declaration of Helsinki calls on researchers, sponsors, and governments to make provisions for post-trial access, such provision may feel impracticable or out-of-reach within psychedelic trials that are already constrained by a high resource demand and significant bureaucratic burden. We show how conceiving of post-trial provision as an integral site of the research process, and an appropriate destination for research funding, will serve to develop the infrastructure necessary for the post-legalisation psychedelic medicine ecosystem. (shrink)

Labiaplasty is a form of genital surgery to reduce large or protruding labia minora. Internationally, the rates of this surgery among women and girls is increasing and is viewed as a worrying trend. Currently, the main clinical strategy is to reassure adolescents that they are normal by talking about the variation of labia size and appearance and showing pictures demonstrating the wide range of normal female genital appearance. For the most part, policy documents recommend against labiaplasty in adolescents, claiming that (...) it is medically non-essential surgery. In this paper, we contrast findings from our interviews with clinicians with the existing literature and policy documents and we point out areas needing more thought. This is qualitative research using semi-structured interviews. We set out to find out on what basis clinicians decide how to treat or manage adolescent patients seeking labiaplasty. We interviewed clinicians who are likely to be approached by under-eighteens requesting labiaplasty. We use interpretive content analysis and thematic analysis to analyse the data. Our findings support the emphasis on education and reassurance as the first step for all patients, but other issues that have not figured previously in the literature that would alter clinical strategies for managing patients emerge as well. Key findings are that reassurance does not always work and that the distinction between functional and appearance concerns is not a solid foundation in itself for deciding whether surgery is ethically appropriate. We conclude that the distinction between functional and appearance concerns is not ethically relevant. It is open to different interpretations and is not regarded by all clinicians as the definitive factor in relation to surgery. The focus of clinicians should be on relieving distress whatever the cause. Appearance reasons may sometimes justify surgery but, also, functional reasons may sometimes not be sufficient justification for surgery. (shrink)

Conceiving a child by way of embryo selection and tissue matching to benefit a sick sibling is generally justified on the grounds that as well as the potential to save the sick child, there is a benefit for the new baby. The new baby is selected so he or she will not have the disease suffered by the first child. It is not possible, however, to select against conditions for which there is no test and Jamie Whitaker’s birth is a (...) case where the process of in vitro fertilisation with tissue matching is viewed as being of benefit only to a third party—the sick child. Some people object to using the technology for this purpose. There are also good reasons to argue that the technology should be used to save a sick child, and that it would be morally remiss for Jamie’s parents not to consent to the use of his cord blood. (shrink)

Literary accounts of traumatic events can be more informative and insightful than personal testimonials. In particular, reference to works of literature can give us a more vivid sense of what it is like to receive a devastating diagnosis. In turn this can lead us to question some common assumptions about the nature of autonomy, particularly for patients in these circumstances. The literature of concentration camp and labour camp experiences can help us understand what it is like to have one's life-plans (...) altered utterly and unexpectedly. Contrary to common views of autonomy which have difficulty in characterising autonomous action when long-standing assumptions are suddenly lost, these examples show that autonomy is possible in these circumstances. We need a theory of autonomy which can deal with traumatic events and is useful in the clinical context. (shrink)

A n IVF mixup has resulted in a white couple giving birth to black twins. Prior to DNA testing, no one can be sure whether the white woman’s eggs were fertilised with the black man’s sperm, or the black couple’s embryo was mistakenly implanted in the white woman. It is believed that Mr and Mrs A, the white couple, want to keep the babies and there is conjecture about Mr and Mrs B, the black couple, wanting them too.1 Under the (...) Human Fertilisation and Embryology Act 1990, a woman who has a child born through IVF, even if it is not genetically hers, is the “legal mother”. Paternity, however, is “open to legal interpretation”.1–3News of the mixup has elicited a range of reactions. It is thought …. (shrink)

Social networking sites such as MySpace and virtual communities such as on-line support groups can be a rich source of data for researchers. These sites can be an effective way of reaching and researching young people in order to address their particular health needs. Internet-based research is also potentially risky and exploitative. There is some guidance for conducting research online, but there are no detailed or universally accepted ethics guidelines for research of webspaces such as MySpace or virtual communities in (...) which young people participate. One question that arises is — If MySpace is a public webspace, can research be done without consent? In this paper I investigate ethical issues surrounding young people’s consent in cyber research. I identify issues that help determine whether consent is needed, offer suggestions for dealing with consent in cyberspace and add my voice to the call for a resource of case studies — indispensible in the development of guidelines and the education of researchers and research ethics committees. (shrink)

In this paper we identify and evaluate arguments for and against offering assisted reproductive technologies , specifically IVF, to HIV discordant couples . The idea of offering ART to HIV discordant couples generates concerns about safety and public health and raises questions such as: what is an acceptable level of risk to offspring and should couples who want this assistance be subject to selection criteria; should they undergo scrutiny about their suitability as parents when those who are able to conceive (...) naturally face no such scrutiny and people with other illnesses are given access to ART? We conclude that offering ART to HIV discordant couples is likely to produce more benefit than harm and violates no ethical principles. Nevertheless, a decision to deny treatment need not constitute unjustified discrimination. (shrink)

The Brisbane Supreme Court has denied an Australian woman’s request to harvest and freeze her dead fiancé’s sperm for future impregnation. After she was denied access to the sperm, the woman learnt that her fiancé may have been a sperm donor and she began checking to find out if his sperm was still available. Given what we know, there is a good ethical argument that the woman should have access to the sperm and should be allowed to have her dead (...) fiancé’s child.Another aspect of this case is that it illustrates the way in which ethics, law, and personal opinion can differ. (shrink)

ABSTRACT I examine the impact of addiction on autonomy in terms of the standard literature on addiction – referred to also as ‘substance dependence.’1 Then in terms of the criteria for substance dependence, by developing a set of practical strategies to help people with addictions think more clearly, I test the idea whether addicts can be helped to become more autonomous. Given that unsuccessful attempts to quit constitute part of the criteria of substance dependence, I look at what goes wrong (...) when people try to quit using a substance. The subjective experience of addiction is an important aid in understanding addiction and first person accounts and literary characterisations of addiction provide insight into the addict's mind and assist us in deciding whether addicts can be helped to become more autonomous. (shrink)

Excluding women from participating in clinical drug trials might seem like a good thing. It may seem like a good way to protect women from the risks of being a research subject and a way to prevent fetal harm. However, the exclusion or inadequate representation of women in clinical trials may actually cause harm. Excluding women from clinical trials does not rule out the possibility of damage to offspring. Nor does it guarantee researchers or institutions freedom from legal liability. The (...) issue of women’s exclusion has received substantial attention in the USA but very little in Australia. (shrink)

The American Journal of Bioethics, Volume 12, Issue 1, Page 42-44, January 2012.

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children’s cancer care, and specifically (...) bone marrow transplant, we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information. (shrink)

Compulsory genetic tests which reveal a predisposition to brain damage could be of more use in preventing harm than brain scans which show that damage has already occurredAmid calls for a ban on boxing the Victorian government in Australia introduced compulsory brain scans for professional boxers in June 2001. Some people think the introduction of this new law is a “tough” measure. Others think the law is of limited value because the damage has already occurred by the time something shows (...) up on a brain scan. The Victorian government is also considering the introduction of compulsory genetic tests that indicate a predisposition to brain damage.Nathan Croucher, a 24 year old construction worker and champion amateur boxer has been banned from professional boxing after a compulsory brain scan showed an abnormality which makes him susceptible …. (shrink)

When is commodification acceptable?Preimplantation genetic diagnosis is usually restricted to couples who are eligible for in vitro fertilisation —infertile couples or those with a history of genetic disease. The Human Fertilisation and Embryology Authority in England and the Infertility Treatment Authority in Australia have both given permission for PGD with tissue typing to detect human leucocyte antigen compatibility in order to save an existing sibling with a life threatening condition. The procedure has also been carried out in the United States.1Heavy (...) criticism followed the February 2002 ruling of England’s HFEA to allow a family to try for a child who is free of thalassaemia and a “perfect match” for a sick sibling.2 Then in August …. (shrink)

Is it right to use pre-implantation genetic diagnosis to select an embryo free of the gene for early-onset Alzheimer’s disease?A 30 year old woman with the gene for early-onset Alzheimer’s disease, who seems certain to develop the disease by the time she is 40, has used IVF and preimplantation genetic diagnosis to select an embryo that is free of the mutant gene. The woman, a geneticist, has given birth to a mutation-free child. This marks the first time that preimplantation genetic (...) diagnosis has been used to “weed out” an embryo with the defect.1–3Early-onset Alzheimer’s is an inherited, incurable disease striking people …. (shrink)

High Culture is a collection of essays containing reflections on addiction. Some of the essays are original and some are reprints. The volume is divided into two sections: the first dealing with literature, philosophy, and the arts and the second with sociology, psychology, and the media. The editors promise something different from the usual “insistent drive to medicalize, discipline, rehabilitate, and contain the subject of drugs within frameworks that disguise deeply rooted moral and religious fears, values and beliefs or prejudices” (...) and that addiction will emerge as something “not reducible to substance abuse or compulsiveness per se” .The editors also lay claim to demonstrating the “complexity, creative value and diversity” of addiction in place of what they describe as the limited …. (shrink)

Cloning Trevor, a story about therapeutic cloning research, appeared in the June issue of The Atlantic Monthly. The story gives a human face to the people whom therapeutic cloning could benefit. It presents an argument for government funding and it puts the usual calls for a moratorium on embryonic stem cell research to allow for more debate, in a less favourable light. The story also highlights some problems with ethical oversight.

Overruling of law said to establish the “right not to be born”The French government has given in to public pressure and overturned a controversial legal ruling which recognised the right of a disabled chld to seek damaages. Most notably, the ruling, widely described as establishing a child's right “not to be born”, had provoked “outrage” amongst groups defending the rights of the disabled and led to a ban on prenatal scans by French gynaecologists. Once again, only parents will be able (...) to seek damages but some people think the ruling has been misinterpreted.The Perruche judgment, a controversial ruling which has been said to establish the “right not to be born”, has now been overruled by a majority of the National Assembly of the French Parliament.1, 2 A bill has been put forward which states “no one can sue for damages for the sole fact of their birth”. It was considered by the senate until January 22, 2002.2In 1982, Josette Perruche discovered red spots covering her four year old daughter. The child was diagnosed with German measles. Mrs Perruche told her …. (shrink)

(2010). Ashley's Interests Were Not Violated Because She Does Not Have the Necessary Interests. The American Journal of Bioethics: Vol. 10, No. 1, pp. 52-54.

This article deals with the prospect of genetically enhancing intelligence. We identify and contrast social attitudes (disapproval) to the use of future genetic technology with social attitudes (approval) for environmental methods of enhancing intelligence. Using various forms of the argument that the means by which enhancement is achieved has moral significance, we look for differences that could justify the different attitudes. We find that the different attitudes cannot be ethically justified. We predict that the lack of ethical justification for distinguishing (...) between means of enhancement is likely to result in the eventual acceptance of genetic enhancement of intelligence. (shrink)

The Kennedy Krieger lead paint study is a landmark case in human experimentation and a classic case in research ethics. In this paper I use the lead paint study to assist in the analysis of the ethics of research on less expensive, less effective interventions. I critically evaluate an argument by Buchanan and Miller who defend both the Kennedy Krieger lead paint study and public health research on less expensive, less effective interventions. I conclude that Buchanan and Miller’s argument is (...) flawed but that does not mean that research designed to find less effective interventions cannot be justified in some situations. Based on my analysis, I suggest questions to ask when considering such research and I offer some principles to guide us. In the process, light is shed on the various debates and issues raised by the lead paint study; e.g. standards of care, researchers’ responsibilities to research subjects, the distinction between treatment and research and the question of what it is that legitimizes public health research. (shrink)