The specific nature of genetic diseases such as genodermatoses (whole families are affected, substantial impact on individual family planning decisions, ethically challenging procedures) needs close cooperation with public non-medical groups, in particular patients associations and ethic committees.
Accordingly, GENESKIN activities also encompass social, ethical and legal issues. For this purpose, in this section we offer a list of European patients associations dedicated to the GENESKIN-related diseases. We also present a list of experts with different scientific backgrounds, ranging from genetics to philosophy/theology, supporting GENESKIN activities with their ethical advice. These experts meet regularly in specific satellite meetings on the platform of the regular GENESKIN congress to discuss ethical questions, e.g. diagnostic and predictive genetic testing, genetic therapy, the use of databanks, patient-doctor-communication and gender aspects. With their statement and reports they become integral part of the scientific GENESKIN-network, setting in motion a process of ethical reflection. Moreover, to ensure a balanced dialog among all groups involved in the GENESKIN project, it is also made available an information kit for non physicians/scientists.

Questionnaire for Patients' Associations

Questionnaire for Researchers