Since the late 1980s, the fetal origins of adult disease, from 2003 developmental origins of health and disease (DOHaD), has stimulated significant interest in and an efflorescence of research on the long-term effects of the intrauterine environment. From the start, this field has been interdisciplinary, using experimental animal, clinical and epidemiological tools. As the influence of DOHaD on public health and policy expanded, it has drawn criticism for reducing the complex social and physical world of early life to women’s reproductive (...) bodies as drivers of intergenerational ills. This paper explains this narrowing of focus in terms of a formative and consequential exchange between David Barker, the British epidemiologist whose work is credited with establishing the field, and the discipline of fetal physiology. We suggest that fetal physiologists were a crucial constituency of support for Barker’s hypothesis about early life origins of disease. Their collaborations with Barker helped secure and sustain the theory amid considerable controversy. The trajectory of DOHaD and its focus on the maternal body can be understood, we argue, as a consequence of this alliance, which brought together two distinct conceptualizations of the intrauterine environment, one from epidemiology and the other from fetal physiology. Along the way, we trace the histories of these conceptualizations, both of which were products of mid-to-late twentieth century British science, and show how Barker’s early emphasis on social and economic conditions was superseded by a narrower focus on physiological mechanisms acting upon the autonomous fetus. (shrink)

BackgroundThe introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. ‘Routinization’ of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However, it is a heterogeneous phenomenon that needs to be scrutinized in the wider context of social practices of reproductive genetics. In different countries with (...) their different regulatory frameworks, different patterns of routines emerge that have different ethical implications.This paper discusses an ethics of routines informed by the perspectives of organizational sociology and psychology, where a routine is defined as a repetitive, recognizable pattern of interdependent organizational actions that is carried out by multiple performers. We favour a process approach that debunks the view – which gives way to most of the concerns – that routines are always blindly performed. If this is so, routines are therefore not necessarily incompatible with responsible decision-making. Free and informed decision-making can, as we argue, be a key criterion for the ethical evaluation of testing routines. If free and informed decision-making by each pregnant woman is the objective, routines in prenatal testing may not be ethically problematic, but rather are defensible and helpful. We compare recent experiences of NIPT routines in the context of prenatal screening programmes in Germany, Israel and the Netherlands. Notable variation can be observed between these three countries (i) in the levels of routinization around NIPT, (ii) in the scope of routinization, and (iii) in public attitudes toward routinized prenatal testing.ConclusionAn ethics of routines in the field of prenatal diagnostics should incorporate and work with the necessary distinctions between levels and forms of routines, in order to develop sound criteria for their evaluation. (shrink)

Die Geschichte der genetischen Pränataldiagnostik ist bislang als Teil der Geschichte der Humangenetik und deren Neuorientierung als klinisch-laborwissenschaftliche Disziplin in der zweiten Hälfte des 20. Jahrhunderts betrachtet worden. Anhand neuen Quellenmaterials soll in diesem Beitrag gezeigt werden, dass das Interesse an der Pränataldiagnostik in Westdeutschland auch im Kontext von Forschungen entstand, die sich mit Gefahren für den Menschen in der Umwelt befassten. Anhand der Debatten um die Einrichtung des DFG-Schwerpunktprogramms „Pränatale Diagnostik genetischer Defekte“ 1970 untersuchen wir, wie die Technik der (...) Amniozentese in Westdeutschland von einer interdisziplinären Forschungsgruppe eingeführt wurde, die sich mit Schädigungen des Organismus durch Strahlen, Arzneimittel und andere Gebrauchsstoffe und Konsumgüter befasste. In einer als ökologische Wende bezeichneten Zeit wachsenden Umweltbewusstseins, so unsere These, sollte durch die Förderung der Pränataldiagnostik eine wahrgenommene Lücke in der Prävention umweltbedingt auftretender genetischer Anomalien geschlossen werden. Für die Pränataldiagnostik als „Schutzmaßnahme“ sprach unter anderem ihre erwartete Finanzierung als Krankenkassenleistung im Zuge der Reform des Abtreibungsrechts. Erst in einem zweiten Schritt führten Veränderungen von Strukturen der Forschung, vor allem aber Erfahrungen in der gynäkologischen Praxis zu einer Neuausrichtung auf die Diagnostik und Prävention mehrheitlich erblicher oder spontan auftretender Anomalien. Die Pränataldiagnostik, so wie sie schließlich in Westdeutschland ab den frühen 1980er Jahren routinemäßig Einsatz fand, hatte mit Fragen der „Umwelt“ kaum noch zu tun. Diese Fallstudie zur Frühgeschichte der genetischen Pränataldiagnostik handelt von dem noch wenig untersuchten Verhältnis von humangenetischer Forschung, klinischer Praxis und Umweltforschung und hat zum weiteren Ziel, den bisher in anderen Kontexten beschriebenen Wandel von Perspektiven in der Vorsorge um 1970 zu beleuchten. (shrink)

An enduring ethical dispute accompanies prenatal screening and testing (PST) technologies. This ethical debate focuses on notions of reproductive choice. On one side of the dispute are those who have supported PST as a way to empower women’s reproductive choice, while on the other side are those who argue that PST, particularly when made a routine part of prenatal care, limits deliberate choice. Empirical research does not resolve this ethical debate with evidence both of women for whom PST enhances their (...) choices but also persistent evidence of recurrent problems between PST and women’s autonomous decision-making. While there have been attempts to remove challenges to reproductive choice, it has been argued that these challenges cannot be removed entirely. In this paper I provide a historical review of PST technologies’ development and in doing so provide a detailed insight into the root causes of this tension between the opposing sides of this debate. This historical account provides evidence that those who championed the early use of these technologies did so in order to achieve a number of wholly different goals other than women’s choice and empowerment. These different aims focus on scientific discovery and eugenic goals and, I argue, areirreconcilablewith women’s choice and empowerment. It thus may not be surprising that the resulting practice of PST continues to resist compatibility with women’s choice and empowerment. Ultimately, by understanding the historical foundations of PST we can more effectively assess how toreconcilewomen’s reproductive autonomy with routine prenatal screening. (shrink)

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we (...) can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies. (shrink)