@article{LenkDuttgeFlatauetal., author = {Lenk, Christian and Duttge, Gunnar and Flatau, Laura and Frommeld, Debora and Poser, Wolfgang and Reitt, Markus and Schulze, Thomas and Weber, Alexandra and Zoll, Barbara}, title = {A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know}, series = {American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics}, volume = {180}, journal = {American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics}, number = {8}, publisher = {Wiley}, doi = {10.1002/ajmg.b.32751}, pages = {576 -- 588}, abstract = {The progress of medical genetics leads to a significant increase in genetic knowledge and a vast expansion of genetic diagnostics. However, it is still unknown how these changes will be integrated into medical practice and how they will change patients' and healthy persons' perception and evaluation of genetic diagnoses and genetic knowledge. Therefore, we carried out a comprehensive questionnaire survey with more than 500 patients, clients seeking genetic counseling, health care staff, and healthy persons (N = 523). The questionnaire survey covered detailed questions on the value of genetic diagnoses for the different groups of study participants, the right to know or not to know genetic diagnoses, possible differences between genetic and other medical diagnoses, and the practical use and implications of genetic knowledge with a special focus on hereditary neuropsychiatric diseases. A huge majority of the participants (90.7\%) stated to have a right to learn every aspect of her or his genetic make-up. Similarly, study participants showed high interest (81.8\%) in incidental health care findings-independent of whether the diseases are treatable or not. One can derive from the data outcome that study participants did not follow the implications of a "genetic exceptionalism" and often considered genetic findings as equivalent in relation to other medical diagnoses.}, language = {en} } @incollection{DuttgeEngelZolletal., author = {Duttge, Gunnar and Engel, Wolfgang and Zoll, Barbara and Schulze, Thomas and Poser, Wolfgang and Lenk, Christian and Weber, Alexandra K. and Flatau, Laura and Frommeld, Debora and Houri, Leila and Reitt, Markus and Smogavec, Mateja and Tukuser, Xenia}, title = {Empfehlungen zum anwendungspraktischen Umgang mit dem »Recht auf Nichtwissen« : Ergebnisse einer rechtsethischen Grundlagenanalyse auf erfahrungswissenschaftlicher Basis in den Anwendungsfeldern von Humangenetik und Psychiatrie}, series = {Das sogenannte Recht auf Nichtwissen : Normatives Fundament und anwendungspraktische Geltungskraft}, booktitle = {Das sogenannte Recht auf Nichtwissen : Normatives Fundament und anwendungspraktische Geltungskraft}, editor = {Duttge, Gunnar and Lenk, Christian}, publisher = {mentis Verlag GmbH}, address = {Paderborn}, isbn = {9783957437792}, doi = {10.30965/9783957437792_018}, pages = {253 -- 269}, abstract = {BMBF-Projektgruppe »Recht auf Nichtwissen": Projektleitung: Prof. Dr. iur. Gunnar Duttge; Co-Projektbeteiligte: Prof. Dr. med. Dr. h. c. Wolf-gang Engel und Prof. Dr. Barbara Zoll (Humangenetik); Prof. Dr. med. Thomas Schulze (Psych-iatrische Genetik); Prof. Dr. med. Wolfgang Poser (Psychiatrie); Prof. Dr. phil. Christian Lenk(Medizinethik); Koordinatorin: Dipl.-Jur. Alexandra K. Weber, MLE. Projektmitarbeiter: LauraFlatau, M.Sc, Debora Frommeld, M.A., Dipl.-Jur. Laila Houri, Dr. rer. nat. Dipl.-Psych. MarkusReitt, Mateja Smogavec, Dipl.-Jur. Xenia Tukuser. Projekthomepage: http://www . recht - auf -nichtwissen.uni-goettingen.de/}, language = {de} }