Ethical Dilemmas due to Prenatal and Genetic Diagnostics – EDIG

EU Project: "Ethical Dilemmas due to Prenatal and Genetic Diagnostics – EDIG". Specific Targeted Research Project, FP6-2004-Science-and Society-9: 016716.
Project Head: M. Leuzinger-Bohleber; Methodology Head: T. Fischmann
Total Funding Amount: €1.1 million

Since 2008 / Project Head: Prof. Dr. Tamara Fischmann

2005 to 2008; 2008 to the Present (Consultation Work)


Short Project Description

EDIG is a project funded by the EU, which focuses on assessing the impacts of prenatal and genetic diagnostics on women, their partners and their relationships, with a specific concentration on inter-individual and cultural differences. Interdisciplinary teams from Germany, England, Greece, Israel, Italy and Sweden are participating in the project.

The intention with the project is to contribute to a more enhanced awareness among both the general public and the scientific community of ethical dilemmas within modern biotechnology, and thus reduce the probability that unresolved societal problems are delegated to single individuals, such as pregnant women and their partners. A further aim of the study is to make a contribution to having sensitive and helpful handling of couples in conflict situations, as well as to develop and provide adequate consultation options in various countries and cultures.

The study consist of two parts: In Study A, women who have undergone prenatal diagnostics (amniocentesis, ultrasound scan, chorionic villus testing, etc.) are assessed utilising questionnaires at 5 different measurement time points. The questionnaires consist of a combination of standardised test methods and items developed specifically for and within the context of the study. The areas being measured include sociodemographic data, social relationships, optimism, mental states, ethical attitudes, the course of the decision-making process, and satisfaction with the health care. Furthermore, semi-structured interviews are being conducted and evaluated.

In Study B, interviews are being conducted with psychoanalysts who treated female and male patients resolving dilemmas in the context of prenatal diagnostics (PND) or a pregnancy termination due to other reasons. The aim is to gain insights into the handling of the ethical dilemma as well as into any potential long-term consequences of the decision taken.

After the conclusion of the study, women who have received a positive PND diagnosis (at the Nordwestkrankenhaus Frankfurt hospital) continue to be supervised on a consultation basis. The documentation of these short-term therapies is planned in further publications.

Publications

  • Marianne Leuzinger-Bohleber, Eve-Maire-Engels, John Tsiantis (eds.) The Janus Face of Prenatal Diagnosis: A European Study Bridging Ethics, Psychoanalysis and Medicine London: Karnac Books, 2008
  • Leuzinger-Bohleber, M., Fischmann, T., Pfenning, N., Läzer. K.L. (2009): Ambivalenz des medizinisch-technischen Fortschritts: eine Untersuchung zu ethischen Dilemmata bei pränataler und genetischer Diagnostik. Psyche – Z. Psychoanal., 63, 189-213.
  • Fischmann, T., Pfenning, N., Läzer, K.L., Rüger, B., Statham, H., Dimavicius, J., Tzivoni, Y., Vassilopoulou, V., Ladopoulou,, K., Bianchi, I., Fiandaca, D., Cirillo, I., Sarchi, F. (2008): Empirical Data Evaluation on EDIG (Ethical Dilemmas due to Prenatal and Genetic Diagnostics). In M. Leuzinger-Bohleber, E.-M. Engels, J. Tsiantis & Consortium of EDIG (Ed.): The Janus Face of Prenatal Diagnostics – a European Study bridging Ethics, Psychoanalysis and Medicine. Karnac Books, 89-135
  • Fischmann, T., Hildt, E. (2011): Ethical Dilemmas in Prenatal Diagnosis. Springer-Verlag
  • Fischmann, T. (2011): Distress and Ethical Dilemmas Due to Prenatal and Genetic Diagnostics – Some Empirical Results. In: T. Fischmann and E. Hildt (Eds.): Ethical Dilemmas in Prenatal Diagnosis. Springer, 51-64