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)
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)
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.
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)
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)
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.
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)
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)
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)
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)
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)
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)
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)
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.
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 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)
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)
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)
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)
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)