Reimagining prenatal care

This project explores the emergence of new tests in prenatal care in three European democracies: Germany, Austria, and Italy. It focuses on cell-free fetal DNA testing, which capitalizes on the circulation of DNA fragments shed from the placenta into a womans bloodstream as well as on the ability of new technologies (so-called next-generation sequencing technologies) to analyze these fragments inexpensively and quickly. Hence, such tests provide clues about the DNA of a fetus without putting a pregnancy at risk through an invasive biopsy (such tests are therefore also known as non-invasive prenatal tests). These tests began to be introduced into clinic settings in 2011 but have in just four years expanded substantially. Such expansion has given rise to a debate in which actors discuss technical aspects of this testing, its social desirability, and consider where this tests might or should develop to the future. Since this debate evolved in different ways in different countries, this project asks why this is the case. It asks how Germany, Austria, and Italy have been integrating cffDNA testing into prenatal care, and why they have been doing this so differently. Building on cross-country comparative methods, the project first explores practices of cffDNA testing, questioning of such practices or endorsements of them, as well as regulatory debates across different spaces. Second, it analyzes how visions and values articulated in these sites enter into conflict and conversation. This helps us distill those imaginaries of care that, the project argues, help us understand why different nations make sense of the same technology in such different ways. Such imaginaries crystallize socially shared understanding on what good care looks like, what kind of technologies should be involved when taking care of human life, as well as politically stabilized ideas on how communities should share or distribute responsibility, when taking care of technologies and human life. The major aim of this project is to develop this concept, building on the empirical work, so as to enhance our understanding of how democracies and biomedicine relate and interact. The project will be situated at the Department of Science and Technology Studies of Vienna. Dr. Ingrid Metzler will be the PI. She will be mentored by Prof. Ulrike Felt.

This social science project investigated interactions between the emergence of "non-invasive prenatal testing" and shared values about technologies and their governance, for which the project used the term "imaginaries of care." It showed that such imaginaries can shape and be reinforced by newly emerging technologies, while some of their key values can also become fragile through developments of technologies. The project focussed on "non-invasive prenatal testing" (NIPT). This is a new technology that capitalizes on the circulation of short fragments of fetal DNA in pregnant women's blood. New methods of DNA analysis can transform these fragments into more or less robust information about the genome of fetuses. The scope of this information has changed since the launch of NIPT in 2011. While NIPT was initially used to detect trisomy 21, some companies now offer tests that can indicate major quantitative variants across the entire genome of a fetus. The project used social science methods (such as expert interviews, participant observations at discussion meetings and scientific conferences, and document analysis) to analyze several situations in which NIPT was envisioned, adopted, endorsed, or problematized. These included situations in which prenatal diagnosticians in Austria integrated NIPT into existing prenatal diagnostics methods, civil society actors in Germany protested against these tests, and experts debated which information generated by NIPT is robust enough to be communicated to pregnant women. The comparison of these situations helped to elucidate imaginaries of care at work in NIPT. On the one hand, the project showed that the introduction, establishment of NIPT, and discussions about it were strongly influenced by imaginaries that preceded these tests' development. A key element of such imaginaries is the understanding that prenatal tests generates knowledge that can enable pregnant women's self-determination, which is anchored in women's "right to know." This understanding shaped how NIPT was used in practice in Austria. Prenatal diagnosticians welcomed NIPT as a test that could complement existing tests and improve the quality of information by reducing its uncertainty. Self-determination and the right to know also shaped public discussions about NIPT. In Germany, NIPT became the subject of an intense debate, in which, in particular, the connection between female self-determination and prenatal diagnostics was controversially discussed. On the other hand, however, the project also showed that the amount of information that the right to knowledge encompasses is becoming increasingly fragile. Thus, in recent years, a scientific debate has developed about what knowledge is robust enough to be shared with pregnant women and what criteria should be used to decide this question.