In the medium term, work on predictive genetic testing will represent an important part of the research on the human genome and in molecular medicine. Predictive genetic tests are going to play a pivotal role in medicine. At the same time they entail important ethical, legal and social problems. Predictive genetic tests may reveal a heightened risk to incur particular diseases, however, they may also tax the capability of comprehension of people lacking in the requisite medical and statistical expertise. Thus, they may lead to suboptimal decisions and even to straightforward genetic discrimination. Without awareness of the problems involved and without appropriate legal regulation, genetic discrimination could easily occur in work- and insurance-related contexts and result in unequal treatment on the basis of a person’s genetic disposition. At this point in time, in Germany, legislation concerning the administration of predictive genetic tests and the use of data thus generated is largely incomplete and/or insufficient.
Reliable high-quality democratic decision making, particularly with regard to any future legis-lation, depends on the formation of qualified opinions among the members of the general pub-lic. Given the plurality of ethical convictions in modern societies, it is essential to facilitate the development of a high level of competence of ethical reasoning that enables the examination of the coherence and consistency of different attitudes, the identification of extant basic agreements and disagreements, the examination of their applicability to current problems, and the identification of possible roads towards compromise.
We are in the process of developing a discourse-based procedure that is especially adapted to young people. The procedure will be tested and evaluated. Its focus is on the differing interests in modern society and the resulting conflicts and ethical dilemmas. Our objective is that pupils develop a competence of critically discussing ethical, legal, and social questions.
- Subject matter information on genetics, philosophy, and social and legal issues is communicated according to the rules of the new didactic approach of “self-organized learning (SOL)”.
- An important component of the procedure is the dialog between the participating adolescents and experts in the fields of genetics, ethics, and law.
- The central component of the discourse procedure is the group discussion of ethical, legal, and social dilemmas.
- The discourse procedure is adapted to 12th graders and will be tested at three secon-dary schools with 15 pupils and three teachers on each occasion. Thus, there will be three three-day workshops.
- A participatory approach allows pupils and teachers alike to be actively involved in the development and optimization of the discourse procedure and the materials for the curriculum.
- The discourse procedure will be evaluated using a multi-method approach.
- In order to perpetuate the results achieved by the ongoing discourse project, curricular materials for project-based lessons are going to be developed. There will be an internet presentation of the project, too, and an official presentation of the recommendations arrived at.
Project documentation and lesson materials
On the website www.gentests-im-diskurs.de you found information about:
- the discourse projects in three model schools
- the votes of the students about predictive genetic testing in the domains of work and insurance
- feedback given by students and teachers about the discourse projects run in their respective schools § lesson materials to enable teachers to conduct the project themselves
- Institut für Humangenetik, Universität Bonn
- Institut für Wissenschaft und Ethik
- Institut für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim