To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving (...) likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties presents a dilemma, preserving privacy from misuse by institutional third parties garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy. (shrink)

This article critically surveys the current bioethical and politico-philosophical debate about the ethical permissibility of a so-called ‘liberal eugenics’ and argues that neither the liberal argument for nor the liberal argument against human genetic enhancement is internally consistent as, ultimately, each ends up violating the very liberal principles it nonetheless pretends to defend. In particular, it will be shown that while the argument against a new eugenics necessarily entails a preemptive dehumanization of any potential enhanced form of life, the argument (...) for it threatens to reduce any non-enhanced form of life to a “wrongful life” or a life not worth living. It will therefore be concluded that the specific stakes of this contentious issue cannot be grasped within a liberal conceptual framework. (shrink)

In a widely acclaimed study from 2002, researchers found a case of gene-environment interaction for a gene controlling neuroenzymatic activity (low vs. high), exposure to childhood maltreatment, and antisocial personality disorder (ASPD). Cases of gene-environment interaction are generally characterized as evincing a genetic predisposition; for example, individuals with low neuroenzymatic activity are generally characterized as having a genetic predisposition to ASPD. I first argue that the concept of a genetic predisposition fundamentally misconstrues these cases of gene-environment interaction. This misconstrual will (...) be diagnosed, and then a new concept—interactive predisposition—will be introduced. I then show how this conceptual shift reconfigures old questions and raises new questions for genetic screening. Attempts to screen embryos or fetuses for the gene associated with low neuroenzymatic activity with an eye towards selecting against the low-activity variant fall prey to the myth of pre-environmental prediction; attempts to screen newborns for the gene associated with low neuroenzymatic activity with an eye towards early intervention will have to face the interventionist’s dilemma. (shrink)

This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child’s welfare and the argument of parental reproductive autonomy. In (...) addition to these two arguments, genome editing could be considered as a worthy alternative to PGD as it may not be subjected to some of the moral critiques moved against this technology. Even if these arguments offer sound reasons in favour of introducing genome editing as a new reproductive option, I conclude that these benefits should be balanced against other considerations. More specifically, I maintain that concerns regarding the equality of access to assisted reproduction and the allocation of scarce resources should be addressed prior to the adoption of genome editing as a new reproductive option. (shrink)

The ArgumentA survey of 2901 genetics professionals in 36 nations suggests that eugenic thought underlies their perceptions of the goals of genetics and that directiveness in counseling after prenatal diagnosis leads to individual decisions based on pessimistically biaed information, especially in developing nations of Asia and Eastern Europe. The “non-directive counseling” found in English-speaking nations is an aberration from the rest of the world. Most geneticists, except in China, rejected government involvement in premarital testing or sterilization, but most also held (...) a pessimistic view of persons with genetic disabilities. Individual, but not state-coerced, eugenics survives in much modern genetic practice. (shrink)

The ArgumentWhat are the aims of genetic services? Do any of these aims deserve to be labeled “eugenics”? Answers to these strenuously debated questions depend not just on the facts about genetic testing and screening but also on what is understood by “eugenics,” a term with multiple and contested meanings. This paper explores the impact of efforts to label genetic services “eugenics” and argues that attempts to protect against the charge have seriously distorted discussion about their purpose. Following Ruth Chadwick, (...) I argue that the existence of genetic services presupposes that genetic disease is undesirable and that means should be offered to reduce it. I further argue that the economic cost of such disease is one reason why governments and health care providers deem such services worthwhile. The important question is not whether such cost considerations constitute “eugenics,” but whether they foster practices that are undesirable and, if so, what to do about them. The wielding of the term “eugenics” as a weapon in a war over the expansion of genetic services, conjoined with efforts to dissociate such services from the abortion controversy, has produced a rhetoric about the aims of these services that is increasingly divorced from reality. Candor about these aims is a sine qua non of any useful debate over the legitimacy of the methods used to advance them. (shrink)

Résumé Cet article traite des rapports entre les processus naturels et l’intervention humaine à partir d’une réflexion sur la sélection en matière d’’insémination artificielle animale et humaine. Il étudie comment les discours de promotion et de justification de l’insémination se traduisent dans les pratiques des professionnels, dans la France du XXe siècle. De l’entre-deux-guerres jusqu’à l’institutionnalisation des banques de sperme dans les années 1970 et 1980, la sélection est au cœur de négociations sociales constantes. Initialement promue à des fins de (...) sélection drastique, l’insémination artificielle humaine relève principalement d’une « production du normal ». La sélection se heurte, en médecine, à des contraintes à la fois normatives, structurelles et matérielles qui en restreignent le périmètre, l’intensité et la portée, y compris avec les techniques de la génétique humaine. Il s’agit alors de comprendre dans quelles conditions une sélection de facto voire un eugénisme systémique peuvent exister en dépit de la forte vigilance éthique revendiquée par les acteurs. (shrink)