SA58 - DIVERSITY OF INFORMATIONAL PREFERENCES OF GENOMIC INFORMATION RESULTS OF A SURVEY OF 860 INDIVIDUALS MAKING (HYPOTHETICAL) DECISIONS CONCERNING GENOMIC INFORMATION

Abstract

Background Undoubtedly, genomic information is getting more and more available via new technologies and becomes part in clinical every-day life. The very personal and foretelling character of genomic information is unique and therefore medical, juridical and ethical implications are widely discussed (Ayuso et al. 2013; Knoppers et al. 2015; Ryan et al. 2017). In addition, there are psychosocial aspects such as self-fulfilling prophecy that might influence an individual´s reaction towards genomic information (Colloca und Finniss 2012; Hagerty et al. 2005). In our study, we surveyed various groups (e.g. patients, experts, and the general population) on their fears, expectations, and their attitudes towards genomic information and their personality traits. Methods Using a 68-item online questionnaire, we asked different stakeholders in Germany about their knowledge of genetics, professional experiences in the genetic context and their personal attitudes, fears, and expectations. We specifically focused on the disclosure and the confrontation with genomic findings. In addition, we measured the Big Five Personality traits (e.g. Neuroticism, Extraversion) with a short version of NEO-FFI (Fruyt et al. 2004). The recruitment started in May 2016 and so far the sample includes 1271 subjects in total, 860 out of which completed the survey. Another focus of our study was to find out whether changes in the information given, as subtle as they might be, lead to divergent decisions. Results When we asked individuals with a (live-time history of) psychiatric disorder if they would wish to receive genomic information about a psychiatric disorder 31% agreed, whereas only 15% of individuals with no psychiatric disorder agreed. Presenting a scenario in which a person receives the information that he or she is likely to develop Alzheimer's disease, 75% of non-medical participants expected the person to promote healthy behavior after the finding, whereas only 53% of people who studied medicine agreed to that statement. Furthermore, we analyzed if specific personality traits were related to specific attitudes (e.g. neuroticism and openness towards genomic information). Analysis showed a low positive correlation between scoring higher on neuroticism and wanting a physician to have the legal duty to disclose incidental findings in research context (r=.138, p=.000). Discussion Our survey sheds light on the diversity of attitudes towards genomic information. For clinical practice, it is crucial to understand that the way how genomic information is presented and communicated to a stakeholder as well as the personality of the individuals themselves (expectations, fears and personality) might impact on the consequences of disclosing genomic information and resulting individual medical decisions.