Meanings and Practices of Prenatal Genetics in Germany and Israel (PreGGI). A comparative empirical and prospective study of the views and ethical concerns of users, non-users and providers of prenatal genetic services in their social and cultural context

产前基因检测的实践和社会理解目前正在经历变革，似乎主要由两股技术发展引发：（1）检测的非侵入性（通过妇女的血液获得胎儿DNA）和（2）检测的全面性（阵列和DNA测序）。然而，其他因素也很重要，例如以前的地方做法和治理、历史背景、宗教和文化理解以及社会价值观。在以色列和德国，产前遗传学被认为是不同的，反映了特定文化的医疗法律政策和公共道德。拟议的研究对这两个国家采取了比较方法。它的目的是了解产前遗传学的社会和技术变化的相互关系及其对个人和社会的意义，展望人类遗传学和基因组学的发展，可以预期在未来。总的来说，该项目结合了三个视角：（1）经验视角，使用比较和定性社会研究方法、重建社会哲学和经验生物伦理学;（2）理论哲学视角，概念化文化和社会之间的相互关系，以及生命或人类条件等关键概念的运作;（3）前瞻性的视角，为进一步理解产前遗传学的文化、人类学和伦理学意义提供了一个开放的、话语式的哲学平台。第一个实证工作包的核心是在以色列和德国进行的定性访谈研究（2 x N=50-55），使用扎根理论方法并采访医疗保健专业人员、无创产前基因检测或阵列/测序的用户和明确的非用户、检测后出生的成年子女、患者组织、政策制定者和检测公司的代表。比较实证研究和重建的文化哲学提供了一个前瞻性的基础上，开放的以色列-德国哲学平台上的产前遗传学的伦理，这可以是可持续的生命周期以外的项目。该平台由来自两国的学术代表组成，将研究出现在遗传研究和社会发展视野中的假设和概念，并将发表其讨论，以促进公共，学术和政治话语。通过考虑以色列和德国的不同方法，这种比较将首次提供对社会技术动态和实践的深刻理解，这些动态和实践导致了产前人类基因组学中生殖关系的转变和规范性的社会构建。本研究有助于德国与以色列的文化合作。它的结果将对这两个国家都很重要，并可能成为其他国家的典范。

The practices and social understandings of prenatal genetic testing are currently undergoing transformations that seem to be triggered primarily by two strands of technological development: (1) non-invasiveness of testing (access to fetal DNA through the womans blood) and (2) comprehensiveness of testing (arrays and DNA sequencing). However, other factors are important as well, such as previous local practices and governance, historical contexts, religious and cultural understandings and the values in a society. Prenatal genetics is seen differently in Israel and in Germany, reflecting culturally specific medico-legal policies and public moralities. The proposed study takes a comparative approach to these two countries. It aims to understand the interrelatedness of social and technological change in prenatal genetics and its meaning for individuals and societies, looking to developments in human genetics and genomics that can be expected in the future. Overall, the project combines three perspectives: (1) an empirical perspective, using comparative and qualitative social research methods, reconstructive social philosophy and empirical bioethics; (2) a theoretical philosophy perspective, conceptualizing the interrelation between the cultural and the social, and the functioning of key concepts such as life or human conditions; and (3) a prospective perspective, creating an open and discursive philosophical platform to further the understanding of the cultural, anthropological and ethical meanings of prenatal genetics. At the centre of the first empirical work package is a qualitative interview study (2 x N=50-55) in Israel and Germany, using Grounded Theory methodology and interviews with healthcare professionals, users and explicit non-users of either non-invasive prenatal genetic tests or arrays/sequencing, adult children born after being tested, patient organizations, policy makers, and representatives of testing companies. Both the comparative empirical study and the reconstructive cultural philosophy provide the basis for a prospective, open Israeli-German philosophical platform on the ethics of prenatal genetics, which can be sustainable beyond the lifetime of the project. The platform, with scholarly representatives from both countries, will work on hypotheses and concepts that appear on the horizon of genetic research and societal developments and will publish its discussions to foster public, academic and political discourse. By considering the different approaches of Israel and Germany, this comparison will for the first time provide a profound understanding of the sociotechnical dynamics and practices that lead to the transformation of generative relationships and of the social construction of normativity in prenatal human genomics. This study contributes to the cultural cooperation between Germany and Israel. Its results will matter in both countries and could be exemplary elsewhere.