A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know

• Published in: American journal of medical genetics. Part B, Neuropsychiatric genetics Neuropsychiatric genetics, 2019-12, Vol.180 (8), p.576-588
• Main Authors: Lenk, Christian, Duttge, Gunnar, Flatau, Laura, Frommeld, Debora, Poser, Wolfgang, Reitt, Markus, Schulze, Thomas, Weber, Alexandra, Zoll, Barbara
• Format: Article
• Language: English
• Subjects: Genetic counseling; Genetics; medical ethics; Mental disorders; neuropsychiatric diseases; patient perception; Patients; Perception; Questionnaires; right not to know
• ISSN: 1552-4841; 1552-485X
• DOI: 10.1002/ajmg.b.32751

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.