Informed Decision-Making for Genetic Testing: Public Discourse and Individual Choice

It can be challenging for individuals to make an informed and reflected decision on whether to take a predictive genetic test, which provides a disease risk assessment in asymptomatic individuals. Since too much information might lead to information overload, adequate information is necessary for an informed decision. However, economic interests and the increasing availability of predictive genetic testing due to scientific advancements and direct-to-consumer services lead to exaggerated expectations and an information bottleneck. Thus, this dissertation aims to examine what information about genetic testing should be given to at-risk individuals and the public to foster informed decision making and to assess how such information is best transmitted.
To investigate these complex issues, this dissertation employed a mixed methodology and focused on the situation in Switzerland. Quantitative and qualitative newspaper content analysis was applied to assess what information is transmitted to the public and compared reporting between the UK and Switzerland. In parallel, Swiss individuals receiving genetic counselling for cancer predisposition genetic testing were interviewed about their reasons, attitudes and information strategies during the genetic testing decision-making process. In line with previous literature, this qualitative study revealed the individuality of the decision-making process and the influence of life philosophy on the decision. Individuals also expressed differing information needs. We identified motivators of and barriers to information-seeking behaviour, for instance, prior knowledge, the doctor-patient relationship, the decision-making style, and the individual life philosophy. The newspaper content analyses showed that coverage about predictive genetic testing was substantially higher and more positively evaluated in the UK compared to Switzerland. Moreover, UK newspapers only mentioned ethical issues on the individual, but rarely on the societal level.
In conclusion, societal issues should be the main focus of mass media coverage regarding predictive genetic testing because of their arena function. Mass media should not be the primary public source of information for predictive genetic testing, as they inherently tend to exaggerate claims and might not be interested in providing general background knowledge. Additionally, I suggest stratifying individuals according to their information needs and set up online information platforms that provide holistic and unbiased information and decision support. In certain circumstances, individuals with low information needs and high prior knowledge could waive genetic counselling and still make an informed decision regarding predictive genetic testing. This might become necessary if genetic counselling resources become scarce due to the increasing demand.
As a secondary aim, this dissertation assessed how media content analyses could be useful for bioethics. They can serve as pilot studies for bioethical inquiries, to make recommendations on how to improve science communication from an ethical perspective, as an indicator for public engagement, and to investigate social phenomena relevant to bioethics.