TY - JOUR A1 - Lenk, Christian A1 - Duttge, Gunnar A1 - Flatau, Laura A1 - Frommeld, Debora A1 - Poser, Wolfgang A1 - Reitt, Markus A1 - Schulze, Thomas A1 - Weber, Alexandra A1 - Zoll, Barbara T1 - A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know JF - American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics N2 - 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. KW - Attitude of Health Personnel KW - Female KW - Genetic Counseling/methods KW - Genetic Testing/ethics KW - Health Knowledge, Attitudes, Practice KW - Humans KW - Incidental Findings KW - Male KW - Middle Aged KW - Surveys and Questionnaires Y1 - 2019 U6 - https://doi.org/10.1002/ajmg.b.32751 VL - 180 IS - 8 SP - 576 EP - 588 PB - Wiley ER - TY - CHAP A1 - Duttge, Gunnar A1 - Engel, Wolfgang A1 - Zoll, Barbara A1 - Schulze, Thomas A1 - Poser, Wolfgang A1 - Lenk, Christian A1 - Weber, Alexandra K. A1 - Flatau, Laura A1 - Frommeld, Debora A1 - Houri, Leila A1 - Reitt, Markus A1 - Smogavec, Mateja A1 - Tukuser, Xenia ED - Duttge, Gunnar ED - Lenk, Christian T1 - Empfehlungen zum anwendungspraktischen Umgang mit dem »Recht auf Nichtwissen« : Ergebnisse einer rechtsethischen Grundlagenanalyse auf erfahrungswissenschaftlicher Basis in den Anwendungsfeldern von Humangenetik und Psychiatrie T2 - Das sogenannte Recht auf Nichtwissen : Normatives Fundament und anwendungspraktische Geltungskraft N2 - 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/ Y1 - 2019 SN - 9783957437792 U6 - https://doi.org/10.30965/9783957437792_018 SP - 253 EP - 269 PB - mentis Verlag GmbH CY - Paderborn ER -