PreGGI

Tamar Nov Klaiman

NIPT in Israel and Germany: Social Meanings and Practices of New Technologies of Prenatal Genetic Testing (social science)

Non-invasive prenatal testing (NIPT) is a new, safe genetic test targeting fetal DNA from maternal blood. It serves as a prenatal screening test for the detection of a continuously increasing number of medical conditions. However, this test is perceived by many as targeting mainly Down syndrome, for which the test is highly sensitive. Due to its special characteristics, namely – non invasiveness, early utilization and increasing abundance of genetic information it provides, NIPT has reinforced social and bioethical quandaries concerning prenatal genetics.

Earlier studies have shown that prenatal genetics (PNG) is viewed and regulated in varied ways across different countries, reflecting local medico-legal policies as well as public and bioethical considerations. However, there are still no studies of NIPT in the Israeli context. This study focuses on the situation of NIPT in the Israeli context as well as compares it to the situation in Germany. In previous works these societies were found to have opposing attitudes and regulations regarding PNG: Israel generally presents liberal and supportive attitudes, whereas Germany can be generally described as more restrictive.

The goal of this project is to learn about the interaction between social and technological change in the setting of NIPT and what this change means for individuals and societies. In continuation to previous studies, concentrating on new methods of PNG will enable to test cultural persistence/change. In order to pursue that, qualitative research is conducted through interviews with relevant stakeholders and analysis of regulations.

The study has 3 foci: a) how parents of children with chromosomal aberrations - mainly Down syndrome – react to NIPT as a new form of PNG. b) A comparative policy analysis regarding NIPT in Germany and Israel. c) Disclosure dilemmas and informed consent in light of uncertainty and the abundance of genetic information gained by the new tests.

Supervisor: Aviad Raz, Ben Gurion University in Be'er Sheva
Second Supervisor: Prof. Christoph Rehmann-Sutter