ABSTRACTThis paper discusses the Brazilian Supreme Court ruling on the case of anencephaly. In Brazil, abortion is a crime against the life of a fetus, and selective abortion of non‐viable fetuses is prohibited. Following a paradigmatic case discussed by the Brazilian Supreme Court in 2004, the use of abortion was authorized in the case of a fetus with anencephaly. The objective of this paper is to analyze the ethical arguments of the case, in particular the strategy of avoiding (...) the moral status of the fetus, the cornerstone thesis of the Catholic Church. (shrink)

US court decisions guaranteeing life-sustaining care to anencephalic infants have been viewed with disfavor, and sometimes disbelief, by some ethicists who do not believe in the necessity of life-sustaining support for those without cognitive abilities or an independently sustainable future. The distance between these two views – one legal and inclusive, the other medical and specific – seems unbridgeable. This paper reports on a program using multicriterion decision making to define and describe persons in a way which both acknowledges the (...) differences perceived by many as well as those commonalities insisted on in U.S. court decisions. It does this through application of the Analytic Hierarchy Process to a hierarchy of humanness criteria, and secondarily through reference to that concept''s subset, personhood. (shrink)

The central concern of this article is whether early induction of labor for an anencephalic fetus can ever be morally justified, particularly by a Catholic healthcare ethics committee. By revisiting and refining arguments in articles by Drane (1992) and Bole (1992) published in this journal, a revised argument – consistent with the Catholic moral tradition – can seemingly be constructed that a Catholic healthcare ethics committee might use to justify early induction of labor in some pregnancies involving an anencephalic fetus. (...) Such a revised argument depends upon two central claims; first, that the anencephalic fetus in question is necessarily in the process of dying when early induction of labor occurs, and second, that the fetus is judged to be undergoing extraordinary or disproportionate means of preserving their life as a result of receiving ongoing maternal support of a mother’s womb. The revised argument developed in this article aims to utilize the doctrine of double effect in conjunction with these two central claims to justify early induction of labor for anencephalic fetal persons in some circumstances. Unfortunately, the revised argument – if successful – would be at odds with a stance taken in the United States Conference of Catholic Bishops (USCCB) 1996 statement “Moral Principles Concerning Infants with Anencephaly.” However, there is reason to believe the revised argument offered in this article is well aligned with other guidance from the USCCB, contained in the publication _Ethical and Religious Directives for Catholic Healthcare Services_ (2018). This article concludes by noting some important limitations of the argument and offering hope that consideration of the argument ultimately helps to strengthen the Catholic moral tradition. (shrink)

In situations where anencephaly is diagnosed and where the mother's life or health is threatened Roman Catholic hospitals are faced with the dilemma of waiting until viability before inducing the fetus, thus potentially putting the mother at further risk. According to most Roman Catholic ethicists, induced delivery before viability is contrary to the Church's prohibition of direct killing of the innocent. The authors propose for discussion a reconsideration of this position in the case of the anencephalic fetus and conclude (...) that taking the life of such a fetus does not constitute an attack on its personal dignity and therefore is morally permissible. (shrink)

A broad range of evidence regarding the functional organization of the vertebrate brain – spanning from comparative neurology to experimental psychology and neurophysiology to clinical data – is reviewed for its bearing on conceptions of the neural organization of consciousness. A novel principle relating target selection, action selection, and motivation to one another, as a means to optimize integration for action in real time, is introduced. With its help, the principal macrosystems of the vertebrate brain can be seen to form (...) a centralized functional design in which an upper brain stem system organized for conscious function performs a penultimate step in action control. This upper brain stem system retained a key role throughout the evolutionary process by which an expanding forebrain – culminating in the cerebral cortex of mammals – came to serve as a medium for the elaboration of conscious contents. This highly conserved upper brainstem system, which extends from the roof of the midbrain to the basal diencephalon, integrates the massively parallel and distributed information capacity of the cerebral hemispheres into the limited-capacity, sequential mode of operation required for coherent behavior. It maintains special connective relations with cortical territories implicated in attentional and conscious functions, but is not rendered nonfunctional in the absence of cortical input. This helps explain the purposive, goal-directed behavior exhibited by mammals after experimental decortication, as well as the evidence that children born without a cortex are conscious. Taken together these circumstances suggest that brainstem mechanisms are integral to the constitution of the conscious state, and that an adequate account of neural mechanisms of conscious function cannot be confined to the thalamocortical complex alone. (Published Online May 1 2007) Key Words: action selection; anencephaly; central decision making; consciousness; control architectures; hydranencephaly; macrosystems; motivation; target selection; zona incerta. (shrink)

This paper challenges the recommendation of 1981 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research that all jurisdictions in the United States should adopt the Uniform Determination of Death Act, which endorses a whole-brain, rather than a higher-brain, definition of death. I argue that the Commission was wrong to reject the "personhood argument" for the higher-brain definition on the grounds that there is no consensus among philosophers or the general population as to what (...) constitutes "personhood". I claim that philosophers agree that some potential for cognitive function is necessary for personhood and that, when this is absent in cases of anencephaly and persistent vegetative state (PVS), the individual should be considered dead. I further argue that the lack of consensus among the general population is due in large measure to misunderstandings about the medical reality of PVS and beliefs influenced by feelings for a specific individual in PVS. I also examine and reject two tutiorist arguments which have been used to support the Commission's position: that the higher-brain definition would threaten the severely senile and severely retarded, and that there are not currently adequate medical techniques for determining when all higher-brain activities have ceased. Keywords: death, personhood, persistent vegetative state, anencephaly CiteULike Connotea Del.icio.us What's this? (shrink)

The dead donor rule—that persons must be dead before their organs are taken—is a central part of the moral framework underlying organ procurement. Efforts to increase the pool of transplantable organs have been forced either to redefine death (e.g., anencephaly) or take advantage of ambiguities in the current definition of death (e.g., the Pittsburgh protocol). Society's growing acceptance of circumstances in which health care professionals can hasten a patient's death also may weaken the symbolic importance of the dead donor (...) rule. We consider the implications of these efforts to continually revise the line between life and death and ask whether it would be preferable to abandon the dead donor rule and rely entirely on informed consent as a safeguard against abuse. (shrink)

: The "dead donor rule" is increasingly under attack for several reasons. First, there has long been disagreement about whether there is a correct or coherent definition of "death." Second, it has long been clear that the concept and ascertainment of "brain death" is medically flawed. Third, the requirement stands in the way of improving organ supply by prohibiting organ removal from patients who have little to lose—e.g., infants with anencephaly—and from patients who ardently want to donate while still (...) alive—e.g., patients in a permanent vegetative state. One argument against abandoning the dead donor rule has been that the rule is important to the general public. There is now data suggesting that this assumption also may be flawed. These findings add additional weight to proposals to abandon the dead donor rule so that organ supply can be expanded in a way that is consistent with traditional notions of ethics, law, public policy, and public opinion. (shrink)

Objective Standards of care regarding obstetric management of life-threatening anomalies are not defined. It is hypothesised that physicians' management of these pregnancies is variable and influenced by demographic factors. Design A questionnaire was mailed to members of the Society of Maternal–Fetal Medicine with valid US addresses assessing obstetric management of both ‘uniformly lethal’ (eg, anencephaly, renal agenesis) and ‘uniformly severe, commonly lethal’ (eg, trisomy 13 and 18) anomalies. Respondents were asked to answer as if not limited by state/institutional restrictions. (...) Fisher's exact or χ2 tests were used as appropriate and correction made for multiple comparisons in analyses that were not prespecified. Results The response rate was 36% (732/2038). Nearly 100% of respondents discuss termination for both uniformly and commonly lethal anomalies. In continuing pregnancies, with patient request for obstetric non-intervention 99% of providers would comply for either uniformly or commonly lethal anomalies. The majority ‘encourage’ such management, but some were non-directive or discouraged this management. In continuing pregnancies, with patient request for full obstetric intervention the majority of respondents was willing to comply for both uniformly (71%) and commonly (82%) lethal anomalies. While most practitioners ‘discouraged’ full intervention, some were non-directive or encouraged this management. Demographics and severity of anomaly influenced counselling. Conclusion Discrepancies exist regarding the management of life-threatening fetal anomalies. Patients may be offered different options based on practitioner demographics. The majority of physicians comply with patient wishes. Differences were noted when comparing the management of lethal with that of severe commonly lethal anomalies, suggesting that practitioners make a distinction when counselling patients. (shrink)

In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the (...) problematic concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate. (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate those with genetic defects.1However, (...) is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being an Interpreter—Beyond LinguisticsPatricia CoronadoInterpreting refers specifically to the process of listening to and analyzing a message received in one language, then recreating the same message and delivering it in another language, all while preserving the meaning. An interpreter should always maintain a professional distance and be neutral to both sides of the conversation. Could I truly walk this line and perform by the book for each encounter?At one (...) of my medical encounters as a Spanish interpreter, I found myself in the midst of a heart-wrenching situation that involved grappling with life and death. No mother ever wants to hear that her baby has a condition that could lead to death either at birth or shortly thereafter. I had the profound experience of witnessing a woman in the final days of her pregnancy come to terms with a devastating reality.Just before I began my duties as an interpreter, I was informed that the baby had a congenital defect in which they would be born without parts of the brain, a condition called anencephaly. If babies with anencephaly are born alive, they usually live only a few hours or days. They have no forebrain or cerebrum (the main thinking structure of the brain), and the remaining brain tissue is often not covered by bone or skin. The baby will be blind, deaf, unconscious, and unable to feel pain.I learned that anencephaly is a serious birth defect, and the cause is not completely understood, but it's believed to be caused by a combination of genetic factors such as mutations or abnormalities, family history of neural tube defects, folic acid deficiency and exposure to certain toxins, medications, chemicals or substances. Hispanic women are more likely than women of other ethnicities to have a baby with anencephaly.During my first session, the medical team had many questions for the mom. For each question, the mother's responses were brief; either a yes or no answer, even when I was acting as a clarifier to make sure there were no misunderstandings. In my head, I thought:• Maybe she is in denial.• Maybe she has faith that a miracle will happen.• Maybe she is just afraid to ask questions.The registered nurse wanted to make sure that mom had what she would need to be comfortable for the day of her delivery. I remember questions like:• Will the baby be baptized?• Would you like to have a priest or a chaplain from the hospital or church?• Would mom or dad cut the umbilical cord?• Do you have a special blanket to shelter the baby? [End Page E10]The mother remained strong and resilient, keeping her emotions inside, at least from my perspective. The meeting was calm.There was a second session in which the medical team invited me to be part of a private meeting to go over key points about this case prior to the delivery. I remember being introduced to the neonatologist, this extraordinary doctor who played a vital role as part of the medical care team.I immediately did my own research about the functions of a neonatologist—a medical professional who manages the care of babies who are born prematurely or with an illness or congenital disability, such as prematurity or congenital malformations (birth defects), among others.I was present on the day of delivery. As I interpreted the emotional complexity of this event, a deep sense of empathy washed over me. I realized I could serve by giving my love through my words, my silence, and my presence. I interpreted for the mom when there were English-speaking care providers, focusing on interpreting for the patient's mom and spouse when needed. I was quiet in the times when a Spanish-speaking care provider spoke to the patient and family. Lastly, I was available—the only person outside of the family who was present during the actual delivery who was not a nurse or doctor—to help interpret and provide support whenever needed.Even with intensely emotional encounters such as this, my commitment to providing support and assistance remained unwavering. I stayed calm, silently praying for the mother and her baby. In an... (shrink)

Many writers argue that future persons cannot have rights because they do not exist now. Therefore, they cannot be our equals. Derek Parfit argues that future persons cannot claim that past persons have violated their rights. If actions of past persons alter the genetic identity of future persons, then they would not exist at all. It is argued that Parfit's view is incorrect. In such cases it is our duty to reason as if there is some real person or other (...) at some temporal distance from us whom we must take precautions not to harm. Moreover, future persons are real, determinate persons. It would be as wrong to discriminate against them as it would be to discriminate against those at spatial distance. ;In accord with Joel Feinberg, rights are interpreted as valid claims to have our interests fulfilled. If it is known in advance that all of a particular future person's basic interests have been destroyed before he or she is born, then that person has a right not to be born. With respect to genetic heritage, some inherited conditions, notably anencephaly, Tay-Sachs syndrome, and Lesch-Nyhan syndrome, do destroy all the basic interests of a person before he or she is born. Such individuals have rights not to be born. Other genetic conditions harm a child and may be a wrong her if such a condition could have been prevented by parents or others responsible for her conception or birth. ;The limitations of predictions in human genetics are reviewed, and a brief history of the misuses of information in genetics to support public policy in eugenics is given. It is argued that no wholescale public program in eugenics should be supported. But, individuals need to make responsible reproductive choices. Lineal descendants have rights not to be harmed by severely debilitating genetic conditions. Moreover, every immature person has rights to be nurtured, and parents have duties to care for children born to them. They have duties not to conceive or in some cases not to give birth to children who would be harmed by genetic diseases. (shrink)

On May 24, 1995, the American Medical Association Council on Ethical and Judicial Affairs issued a rather controversial opinion that it is ethically permissible to use anencephalic infants as living organ donors. Approximately 1,000 to 2,000 infants are born each year in the United States with anencephaly, a congenital birth defect whereby the infant has no forebrain and cerebrum. Without higher brain functions, the infants can never experience consciousness, thoughts, emotions, or pain. Fewer than half survive more than a (...) day, and more than 90 percent die within one week. However, by the time brain death occurs in anencephalic infants, their organs are no longer suitable for donor purposes because they have deteriorated beyond use.In 1988, the AMA Council declared that it is ethical to use the infants as organ donors only after they have died. Now the Council has revised that opinion, and it proposes to allow removal of organs before death, as long as the parents consent and two doctors concur in the diagnosis of anencephaly. (shrink)

An anencephalic infant, who came to be known as Baby K, was born at Fairfax Hospial in Falls Church, Virginia, on October 13, 1992. From, the moment of birth and repeatedly thereafter, the baby's mother insisted that aggressive measures be pursued, including cardiopulmonary resuscitation and ventilator support, to keep the baby alive as long as possible. The physicians complied. However, following the baby's second admission for respiratory failure, the hospital sought declaratory relief from the court permitting it to forgo emergency (...) life support on the grounds that “a requirement to provide respiratory assistance would exceed the prevailing standard of medical care,” and that “because any treatment of their condition is futile, the prevailing standard of medical care for infants with anencephaly is to provide warmth, nutrition, and hydration.” The United States Court of Appeals for the Fourth Circuit ruled in favor of the baby's mother, citing the federal Emergency Medical Treatment and Active Labor Act , which contained no “standard of care” exception to the requirement to provide “treatment necessary to prevent the material deterioration of the individual's condition.” An appeal to the United States Supreme Court was rejected. The baby died some two and one-half years later of cardiac arrest during her sixth visit to the emergency department of Fairfax Hospital for respiratory failure. (shrink)

Offers possible solutions to such medical dilemmas as who should receive organ transplants.

This paper discusses how alternative concepts of personhood affect the definition of death. I argue that parties in the debate over the definition of death have employed different concepts of personhood, and thus have been talking past each other by proposing definitions of death for different kinds of things. In particular, I show how critics of the consciousness-related, neurological formation of death have relied on concepts of personhood that would be rejected by proponents of that formulation. These critics rest on (...) treating persons as qualitative specifications of human organisms or as identical to human organisms. Since advocates of the consciousness-related, neurological formulation of death are not committed to either of these views of personhood, these critics commit the fallacy of attacking a straw man. I then clarify the substantive concept of personhood that may be invoked in the consciousness-related, neurological formulation of death, and argue that, on this view and contra Bernat, Culver, and Gert, persons have always been the kind of thing that can literally die. I conclude by suggesting that the discussion of defining death needs to focus on which approach to personhood makes the most sense metaphysically and morally. (shrink)