Rapid advances in the science of neurogenetics and its applications present new and complex ethical issues for individuals and society. ELSI programs have been an integral part of genetic research since the inception of the Human Genome Project in order to address the implications of this. This has paved the way for the establishment of ethical and legal standards in cutting edge research for the well-being of research participants, confidentiality issues and the translation of research results into improvements in human health.
Research to identify the genetic basis of behavioral traits, psychological disturbances and personality such as that performed in the IMAGEN project is extremely sensitive since it explores core human issues such as the origin of “self”, “self-determination” and “free will”. The involvement of children in research raises a further ethical problem since children are not legally able to give informed consent. This issue remains critical from an ethical point of view despite the fact that parents or legally entitled representatives have a right to be actively informed and to withdraw consent. Little is known about the impact of research exploring the background of human nature and mental health on children and their concept of life.
The objectives of WP9 are as follows:
- Offer researchers appropriate strategies for solving ethically sensitive problems which may arise during this project.
- Elaborating detailed strategies and models for decision making processes concerning emerging ethical problems.
- Disseminating these result of good practice in the form of publications and teaching materials.
WP leader is Professor Dr. Marcella Rietschel. Marcella Rietschel is the Head of the Division of Genetic Epidemiology in Psychiatry at the CIMH. She is a psychiatrist and psychotherapist and has a registration for medical genetics. As well as her involvement in and leadership of several national and international research projects into the genetics of psychiatric disorders, she has been project leader in two ELSI projects funded by the Federal Ministry of Education and Research. These projects investigated the ethical implications of genetic research into common psychiatric disorders as well as the fears, expectations and understanding of such research and its results among the general population. She initiated and organized a nationwide symposium which brought together university ethics-committee leaders, geneticists, lawyers, philosophers, clerics, representatives from the pharmaceutical industry, lay people and self-help groups to discuss the impact of ethical problems inherent in psychiatric genetic research
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