Abstract Human germline genome editing is increasingly being seen as acceptable provided certain conditions are satisfied. Accordingly, genetic modifications would take place on eggs or sperm (or their precursor cells) as well as very early embryos for the purpose of bringing children into existence with or without particular genetic traits. In this context, a number of already discussed and separate arguments, such as the (1) synecdoche, (2) non-identity (3) inherent equality and (4) expressivist arguments, can be brought together in the new context of examining, from an ethical perspective, some of the possible consequences of such germline genome editing. In so doing, it becomes clear that these novel procedures are incompatible with the concept of equality in value and in worth of all human beings in a genuinely inclusive society. Such equality is expressed in Article 1 of the United Nations’ Universal Declaration of Human Rights which states that: ‘All human beings are born … equal in dignity and rights.’
Abstract As reproductive genetic technologies advance, families have more options to choose what sort of child they want to have. Using preimplantation genetic diagnosis (PGD), for example, allows parents to evaluate several existing embryos before selecting which to implant via in vitro fertilization (IVF). One of the traits PGD can identify is genetic deafness, and hearing embryos are now preferentially selected around the globe using this method. Importantly, some Deaf families desire a deaf child, and PGD–IVF is also an option for them. Selection for genetic deafness, however, encounters widespread disapproval in the hearing community, including mainstream philosophy and bioethics. In this paper I apply Elizabeth Barnes’ value-neutral model of disability as mere-difference to the case of selecting for deafness. I draw on evidence from Deaf Studies and Disability Studies to build an understanding of deafness, the Deaf community, and the circumstances relevant to reproductive choices that may obtain for some Deaf families. Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms. I thus advocate that it is sometimes morally permissible to select for deafness in one’s child.
Dimitra Chousou, Daniela Theodoridou, George Boutlas, Anna Batistatou, Christos Yapijakis, Maria Syrrou
Abstract Heredity and reproduction have always been matters of concern. Eugenics is a story that began well before the Holocaust, but the Holocaust completely changed the way eugenics was perceived at that time. What began with Galton (1883) as a scientific movement aimed at the improvement of the human race based on the theories and principles of heredity and statistics became by the beginning of the 20th century an international movement that sought to engineer human supremacy. Eugenic ideas, however, trace back to ancient Greek aristocratic ideas exemplified in Plato’s Republic, which played an important role in shaping modern eugenic social practices and government policies. Both positive (encouragement of the propagation of the fit, namely without hereditary afflictions, i.e. socially acceptable) and negative (institutionalization, sterilization, euthanasia) eugenics focused on the encouragement of healthy and discouragement of unhealthy reproduction. All these practices were often based on existing prejudices about race and disability. In this article, we will focus on the rise of eugenics, starting with the publication of Origin of Species to the Holocaust. This examination will be multidisciplinary, utilizing genetics, legal history and bioethical aspects. Through this examination, we will discuss how provisional understandings of genetics influenced eugenics-based legislation. We will also discuss the rise of biopolitics, the change of medical ethos and stance towards negative eugenics policies, and the possible power of bioethical principles to prevent such phenomena.
Abstract In a recent article in this journal, Abram Brummett argues that new and future assisted reproductive technologies will provide challenging ethical questions relating to lesbian, gay, bisexual and transgender (LGBT) persons. Brummett notes that it is likely that some clinicians may wish to conscientiously object to offering assisted reproductive technologies to LGBT couples on moral or religious grounds, and argues that such appeals to conscience should be constrained. We argue that Brummett’s case is unsuccessful because he: does not adequately interact with his opponents’ views; equivocates on the meaning of ‘natural’; fails to show that the practice he opposes is eugenic in any non-trivial sense; and fails to justify and explicate the relevance of the naturalism he proposes. We do not argue that conscience protections should exist for those objecting to providing LGBT people with artificial reproductive technologies, but only show that Brummett’s arguments are insufficient to prove that they should not.
Abstract Background: Hans Asperger (1906–1980) first designated a group of children with distinct psychological characteristics as ‘autistic psychopaths’ in 1938, several years before Leo Kanner’s famous 1943 paper on autism. In 1944, Asperger published a comprehensive study on the topic (submitted to Vienna University in 1942 as his postdoctoral thesis), which would only find international acknowledgement in the 1980s. From then on, the eponym ‘Asperger’s syndrome’ increasingly gained currency in recognition of his outstanding contribution to the conceptualization of the condition. At the time, the fact that Asperger had spent pivotal years of his career in Nazi Vienna caused some controversy regarding his potential ties to National Socialism and its race hygiene policies. Documentary evidence was scarce, however, and over time a narrative of Asperger as an active opponent of National Socialism took hold. The main goal of this paper is to re-evaluate this narrative, which is based to a large extent on statements made by Asperger himself and on a small segment of his published work.
Methods: Drawing on a vast array of contemporary publications and previously unexplored archival documents (including Asperger’s personnel files and the clinical assessments he wrote on his patients), this paper offers a critical examination of Asperger’s life, politics, and career before and during the Nazi period in Austria.
Results: Asperger managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities. He joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program. The language he employed to diagnose his patients was often remarkably harsh (even in comparison with assessments written by the staff at Vienna’s notorious Spiegelgrund ‘euthanasia’ institution), belying the notion that he tried to protect the children under his care by embellishing their diagnoses.
Conclusion: The narrative of Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.
Louise P King, Rachel L Zacharias, Josephine Johnston
Abstract Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfill and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. Is it unfair for insurance policies to exclude from coverage the costs of giving fertility to those who lack it or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy and in light of increasingly complex and costly reproductive technologies? In today’s dialogue about reproduction, medicine, and ethics in the United States, old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, while new technologies—like those used to edit the genes of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and the pursuit of justice. As one of the nine essays in this collection asks, why should certain women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special report from the Hastings Center Report..
Abstract This article explores obstetricians-gynaecologists’ experiences and attitudes towards abortion, based on two mixed-methods studies respectively undertaken in Italy in 2011–2012, and in Spain (Cataluña) in 2013–2015. Short questionnaires and in-depth interviews were conducted with 54 obstetricians-gynaecologists at 4 hospitals providing abortion care in Rome and Milan, and with 23 obstetricians-gynaecologists at 2 hospitals and one clinic providing abortion care in Barcelona. A medical/moral classification of abortions, from those considered ‘more acceptable’, both medically and morally – for severe foetal malformations – to the ‘least acceptable’ ones – repeated ‘voluntary abortions’, emerged in the discourse of most obstetricians-gynaecologists working in public hospitals, regardless of their religiosity. I argue that this is the result of the increasing medicalisation of contraception as well as of reproduction, which has reinforced the stigmatisation of ‘voluntary abortion’ (in case of unintended pregnancy) in a context of declining fertility rates. This contributes to explain why obstetricians-gynaecologists working in Catalan hospitals, which provide terminations only for medical reasons, unlike Italian hospitals, do not experience abortion stigma and do not object to abortion care as much as their Italian colleagues do.
Abstract John Harris and Julian Savulescu, leading figures in the “new” eugenics, argue that parents are morally obligated to use genetic and other technologies to enhance their children. But the argument they give leads to conclusions even more radical than they acknowledge. Ultimately, the world it would lead to is not all that different from that championed by eugenicists one hundred years ago.
Statement of conscience in trisomy 21 screening: Pregnant women’s free will jeopardized
Extract [Paragraph de conclusion] C’est précisément parce qu’« il ne peut y avoir d’anesthésie des consciences » qu’il faut s’opposer fermement à toute mesure qui restreindraient davantage encore la liberté décisionnelle des femmes en matière de dépistage prénatal. L’idée de clause de conscience soutenue par Leblanc et Ardouin en fait partie.
[Concluding paragraph] It is precisely because “there can be no anesthesia of conscience” that we must strongly oppose any measures that would further restrict women’s decision-making freedom in prenatal screening. The idea of a conscience clause supported by Leblanc and Ardouin is one of them.
Abstract Under the Euthanasia Program of Nazi Germany, more than 200,000 psychiatric patients were killed by doctors in psychiatric institutions. After summarising the historical facts and the slow and still going-on process of illuminating and understanding what happened, some ethical consequences are drawn. What can we learn from history? The following aspects are addressed: the special situation of psychiatry in times of war, bioethics and biopolitics, the responsibility of the psychiatrist for the individual patient, the effects of hierarchy on personal conscience and responsibility, the unethical “curable- uncurable” distinction and the atrocious concept that persons differ in their value.