Genetic information is increasingly provided outside of the traditional clinical setting, allowing users to access it directly via specialized online platforms. This development is possibly resulting in changing ethical and social challenges for users of predictive genetic tests. Little is known about the attitudes and experiences of users of web-accessed genetic information. This survey analyzes data from two European countries with regard to the utility of genetic information, the users’ ways of making use of and dealing with information, and their sharing behavior. Particular focus is given to ethical and social questions regarding the motivation to share personal genetic results with others. Social factors tested for are national background, gender, and marital, parental, and educational status. This study will contribute to public discourse and offer ethical recommendations. The study will also serve to validate the developed questionnaire for use in population representative surveys.
Sabine Wöhlke is Professor for Health Science and Ethics at the Hamburg University of Applied Sciences. Her background focuses on anthropological, cultural and ethical applied sciences. Her main interests are ethical and cultural aspects of organ transplantation, digital health literacy and nursing ethics. She has great experience in qualitative social-empirical research in the field of patient-centered communication and shared decision making. She is member of the clinical ethics committee of the University Medical Center Göttingen and a member of the Ethical, Legal and Psychosocial Aspects of Transplantation (ELPAT), a division of the European Society for Organ Transplantation (ESOT), where she participates in the working group on “Public Issues”.
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