PreGGI

Funded by the Deutschen Forschungsgemeinschaft (DFG) (project duration 2017-2021).

Recent developments in prenatal genetics – in particular the introduction of non-invasive prenatal genetic tests on chromosomal variations such as trisomies 13, 18 and 21 (NIPT) – change a morally and culturally complex practice of prenatal diagnosis in various ways. These changes touch on fundamental ethical and philosophical questions about intergenerational relationships, pregnancy, and who should be born and why.

Germany and Israel are both countries with technologically advanced healthcare systems. However, in many respects, their cultural attitudes towards genetic and reproductive medicine, and how they regulate it, run contrary to one another. Their societies are closely related, with their complex and tragic history during and after the Nazi regime in Germany. The Israeli-German setting therefore represents a research opportunity for a better understanding of the specific cultural practices, discourses and contexts in these two countries and beyond.

The goal of this project was to describe and analyse the relationships between socio-technological change in prenatal genetic diagnosis, to investigate their cultural and historical preconditions, and to interpret their meanings for individuals as well as for societies in the future. The project studied the views and attitudes of users and non-users of NIPT and scrutinised ethical evaluations and legal regulations in terms of the underlying assumptions. It included questions of conditio humana, of constraints on human existence, the significance of non-knowledge, and the meaning of responsibility with regard to genetics.

Three methodological approaches were combined: (1) a comparative empirical study with a total of 42 semi-structured interviews conducted in Germany and 52 in Israel. Interviewees included health professionals specialising in obstetrics and gynaecology and/or genetics; women without unusual medical family history; parents or other close family members of children with DS; and disability activists. (2) A philosophical-theoretical investigation of key concepts involved in the discourses surrounding human genetics, and (3) the development of a collaborative perspective in the shape of an Israeli-German social philosophical platform on biomedical technologies, epistemic discourses and body politics.

Key findings: In German discourse, references to the historical dimension dominate in public deliberation, namely the need to take distance from the inhuman practices of the National Socialist period and to avoiding any reference to “selection” and “eugenics”, while still emphasising the individual role of the pregnant woman and her right to an informed choice. Meanwhile, in Israel’s practice the different prenatal tests are well established, and are understood as empowering woman’s choices, securing the life of the family, and enhancing the “health” of the Jewish collective body. The key notions for these different – and in some respects opposite – practices are “genetic responsibility” and “genetic risk”. This relates to the Jewish tradition (Halacha), which does not consider the foetus in its early stages to be a “person”. In Germany, the unresolved debates about this issue match the ambivalent approach – hesitant, yet decisive – towards testing. In Germany, NIPT is covered by health insurance (although only on a case-by-case basis that considers the situation of the pregnant woman, and not of the foetus, from spring 2022), yet its implementation is accompanied by concerns and criticism.

During recent decades, the ways to describe the concerns with regard to the beginning of life transformed into a vocabulary of risk and responsibility, something that we found in both countries. Interestingly, the focus on not wanting to know, and on whether it would be irresponsible not to know genetic risks in advance (which one Israeli woman clearly suggested in her interview), brings to light that in Israel, it is normal and standard to have prenatal genetic testing, and may even be considered a social requirement, whereas in Germany such certainty and the “normality” of NIPT is much less common.

You can find the Israeli project page here.

You can find the publications here.

The project dissertations are here.