This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples’ motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the interviews conducted (...) with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients’ views about the doctor’s involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle. (shrink)

In the chapter entitled ‘Philosophy and the Meaning of Life’ in Robert Nozick’s Philosophical Explanations there is an admonitory passage with many applications. ‘It is a puzzle,’ says Nozick, ‘how so many people, including intellectuals and academics devote enormous energy to work in which nothing of themselves or their important goals shines forth, not even in the way their work is presented. If they were struck down, their children upon growing up and examining their work would never know why they (...) had done it, would never know who it was that did it. They work that way and sometimes live that way, too’. (shrink)

This thesis explores the concept of "Sanctity of Life" from the perspective of what "life," in particular human life, means today. With the rapid advances in science and modern medical practice, the concept of life has undergone many changes, shaking the foundations of what before made us view life as sacred. Modern thought has brought new forms of understanding to the concept of life.

OBJECTIVES: To study attitudes in the Danish population towards treatment of severely handicapped and extremely preterm infants and to define areas of consensus and controversy. DESIGN: Mail-delivered questionnaire. SETTING: Denmark. Survey sample--A random sample of 1080 persons aged from 18 to 45 years. RESULTS: The overall response rate was 68%. There was strong consensus (more than 75% agreement) that life-prolonging treatment should be provided for an infant born after 24 weeks' gestation with respiratory distress and, for an infant with myelomeningocele, (...) when the parents were in favour of treatment. Further, there was almost uniform agreement that not all infants should be treated no matter how serious the condition. Major controversies concerned the severity of a condition needed to justify omission of life-prolonging treatment, the role of parental attitude and the options in non-treatment cases. Forty-six per cent thought it ought to be legal to kill the infant in at least some of these cases. CONCLUSION: Although the study revealed wide divergences of opinion with regard to questions about limits of treatment and about end-of-life decisions it also showed that there was general acceptance both that life-prolonging treatment ought to be provided even in relatively severe cases if this was in accordance with parental wishes, and that life should not be saved at all costs. (shrink)

Thomas Long has argued that there is an irreconcilable metaphysical difference between the views of those who, like ourselves, believe that on quality-of-life grounds it is sometimes justifiable to end the life of a severely handicapped infant, and those who, like Paul Ramsey, reject this view. Because of this metaphysical difference, Long considers it impossible for our arguments to refute Ramsey's position. We disagree.

Since 1973 the practice of infanticide for some severely handicapped newborns has been receiving more open discussion and defence in the literature on medical ethics. A recent and important argument for the permissibility of infanticide relies crucially on a particular concept of personhood that excludes the theological. This paper attempts to show that the dispute between the proponents of infanticide and their religious opponents cannot be resolved because one side's perspective on the infant is shaped by a metaphysics that is (...) emphatically rejected by the other. In such a situation philosophical argument is powerless to bring about a resolution because there can be no refutation of one side by the other. (shrink)

Objectives—To assess whether UK and US health care professionals share the views of medical ethicists about medical futility, withdrawing/withholding treatment, ordinary/extraordinary interventions, and the doctrine of double effectDesign, subjects and setting–A 138-item attitudinal questionnaire completed by 469 UK nurses studying the Open University course on “Death and Dying” was compared with a similar questionnaire administered to 759 US nurses and 687 US doctors taking the Hastings Center course on “Decisions near the End of Life”.Results–Practitioners accept the relevance of concepts widely (...) disparaged by bioethicists: double effect, medical futility, and the distinctions between heroic/ordinary interventions and withholding/ withdrawing treatment. Within the UK nurses' group a “rationalist” axis of respondents who describe themselves as having “no religion” are closer to the bioethics consensus on withholding and withdrawing treatment.Conclusions—Professionals' beliefs differ substantially from the recommendations of their professional bodies and from majority opinion in bioethics. Bioethicists should be cautious about assuming that their opinions will be readily accepted by practitioners. (shrink)

Throughout the world, research ethics committees are relied on to prevent unethical research and protect research subjects. Given that reliance, the composition of committees and the manner in which decisions are arrived at by committee members is of critical importance. There have been Instances in which an inadequate review process has resulted in serious harm to research subjects. Deficient committee review was identified as one of the factors In a study in New Zealand which resulted in the suffering and death (...) of many women diagnosed with carcinoma in situ. (shrink)

In this paper we clarify some issues related to our previous article ‘After-birth abortion: why should the baby live?’.

This article critically explores the notion of those sociopolitical spaces that are ‘disability’, ‘holism’ and ‘genetics’, arguing from the perspectives of someone who identifies as having a disability. Medical genetics is seen to reflect the ideology and dominant biomedical reductionist thought. In contrast with this, it is proposed that disability and health are inherently social. A nursing approach is seen to recognize the social and holistic nature of the human person and to present a critical reflection on the reductionistic applications (...) of medical genetics. (shrink)

The notion of information puts the human, the animal and the vegetable all on the same plane, and tends to dissolve the previous specificities of these categories. DNA, in this way, is fetishized. Also, the notion of information, and of the gene, has moved from the domain of expert or technical culture to become a part of mass culture: a development that has important social consequences. The human body is seen as a prototype that needs to be tested or rectified (...) (a consequence of the notion of ‘bad’ genes). From prenatal testing to the courtroom, it is implicitly around the notion a ‘life worth living’ (that is to say, of good morphological or genetic quality) that intense debates have arisen concerning the status of the body, of illness and of disability. Genetics is becoming part of the social environment, and it is setting itself up as a form of secular religion, with fundamentalist overtones. This article will analyse the anthropological shifts that have grown up around these new definitions of the human. (shrink)

South Africa’s Choice on Termination of Pregnancy Act of 1996 implicitly expresses the attitude that the prenatal detection of foetal abnormality justifies selective abortion, even at a stage when abortion is in general morally prohibited. It will be argued that this attitude is logically incompatible with a simultaneous commitment to non-discrimination against persons with disabilities, in that the Act makes allowance for the subjection of beings that are considered to be morally significant, but that exhibit disabling characteristics, to worse treatment (...) than their non-disabled counterparts, despite the fact that this differential treatment is not always justified by the presence of impairment. (shrink)