„Direct to Consumer“-Gentestangebote (DTC GT) im Internet – Eine empirisch-ethische Untersuchung kommunikationsethischer Aspekte unter Berücksichtigung der Perspektive medizinischer Lai*innen mit Fokusgruppen

von Manuel Schaper
Kumulative Dissertation
Datum der mündl. Prüfung:2020-12-03
Erschienen:2022-11-22
Betreuer:Prof. Dr. Silke Schicktanz
Gutachter:Prof. Dr. Silke Schicktanz
Gutachter:Prof. Dr. Matthias Kettner
Förderer:GSGG
Zum Verlinken/Zitieren: http://dx.doi.org/10.53846/goediss-9533

 

 

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Name:Kumulative Dissertation Schaper DTC GT.pdf
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Zusammenfassung

Englisch

The cumulative dissertation examines direct to consumer genetic testing (DTC GT) with regard to the communication-ethical dimension of its marketing and with special consideration of the perspective of medical lay people. It combines theoretical-conceptual and empirical parts using focus groups. The former relate to considerations of the communication-ethical dimension of health communication in general and the addressing of medical lay people by DTC GT websites in particular. The leading question is which ethical aspects arise when consumers are addressed by DTC GT companies. This question can in turn be broken down into two essential sub-questions, which are each discussed in the context of two sub-chapters (i.e. publications): 1. What are the ethical implications of persuasive communication techniques in the context of health communication in general and DTC GT in particular? 2. What are medical lay people's perspectives on DTC GT? The thesis provides a detailed reconstruction and description of various techniques used in public health communication, in particular persuasion, and their respective functioning and ethical implications. It shows that communication techniques can operate in a moral grey area regarding the recipients‘ autonomy by using arational appeals and that such techniques are being used in advertising for DTC GT, while they do not align with the ideal of non-directiveness in genetic counseling. It further provides a comparative analysis of focus groups with lay people in Germany, Israel, the Netherlands and the UK, highlighting differences and similarities in (moral) attitudes, perceptions and evaluations regarding DTC GT, while special focus is given to the issues of trust in and trustworthiness of commercial providers of genetic testing vs. clinical genetic testing in the traditional health care context. Based on the analysis, some practical recommendations are given: 1. Development of ethical standards regarding communication / advertising in collaboration with stakeholders involved (especially consumers, medical and human genetics associations, biotech companies, consumer protection organizations) 2. In the case of Germany: Ensuring the quality of commercially offered genetic tests analogous to existing regulations of the Gendiagnostik-Gesetz (GenDG) (e.g. by establishing and monitoring binding standards, state-controlled certification, mandatory involvement of medical professionals) 3. Linking provision of DTC GT with professional, non-directive genetic counseling by doctors 4. Provision of guiding information and raising awareness of the benefits and risks as well as the limitations of genetic tests and their predictive value 5. Sensitization for data protection / privacy issues in general, but also in lifestyle tests
Keywords: Direct To Consumer Genetic Testing; Focus Group; Empirical Ethics; Communication Ethics; Lay People; Persuasion; Ethics; Genetic Testing
Schlagwörter: Gentest; Empirische Ethik; Ethik; Persuasion; Kommunikation; Fokusgruppe; Laien; kommerzielle Gentests
 
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