Genetic Testing: Factors Influencing Public Interest and Attitudes
Project funded by own resources
Project title Genetic Testing: Factors Influencing Public Interest and Attitudes
Principal Investigator(s) Elger, Bernice Simone
Co-Investigator(s) Shaw, David
Meyer zu Schwabedissen, Henriette
Project Members Zimmermann, Bettina
Organisation / Research unit Ethik / Bio- und Medizinethik (Elger)
Project start 01.07.2016
Probable end 30.06.2019
Status Active
Abstract

The Human Genome Project, which started in the 1990s, achieved its initial aim of sequencing the first human genome in 2003. Since then, sequencing technologies have improved significantly, making DNA sequencing faster, easier and cheaper. Sequencing of pre-defined gene panels as well as Whole Exome Sequencing has arrived in the medical practise in many countries, Switzerland among them. Alongside other applications such as prenatal genetic diagnostics or for monogenetic rare diseases, genetic testing for cancer has been used frequently. Alongside with these genetic advances in both research and clinical practise, Ethical, Legal and Social Issues (ELSI) of genetics have been widely raised, discussed and studied.

The increase in genetic medical knowledge and technologies bring many challenges that need to be addressed. This project aims to contribute to this issue by investigating factors influencing public interest and attitudes towards genetic testing with the following research questions: (1) Investigate what the most important print media from the German and the French speaking part of Switzerland have written about chosen aspects of genetic testing in the last four years; and (2) investigate attitudes, reasons and information strategies of people requesting a predictive genetic test.

By conducting a media content analysis of Swiss online media we aim to assess the publicly discussed aspects about genetic testing in Switzerland. It can to some extent reflect public awareness of the different aspects on genetic testing, and might uncover possible differences between the German and French speaking part of Switzerland. In addition, this analysis is helpful for health personnel and policy makers to identify misconceptions and need for public education to foster evidence-based discussion of these topics in the (Swiss) society.

Attitudes, reasons and strategies for handling decisions connected to predictive genetic testing for inherited cancer risk will be investigated by interviewing people using or interested in these genetic tests. Patient interviews can uncover attitudes and motivations for testing, as well as so far unknown factors that help patients through personal decisions and testing procedures. We decided to focus on patients here, however in a next step the interest, knowledge and attitudes of other players such as general practitioners, specialized medical doctors or health insurances will also be of interest in that context. With the results of this study, we thus aim to establish a basis for further research on information strategies, interest and attitudes of people in Switzerland towards genetic testing.

Keywords genetic testing, public debate, mass media, science communication, ethics
Financed by University funds
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