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• W3011906233 abstract "Genetic testing is expanding at high speed. Whole Genome Sequencing (WGS) permits detecting mutations in the entire human genome, resulting in a better diagnosis of (rare) hereditary disorders and a more accurate personalized medicine. However, sequencing the whole genome can also reveal medical information a patient did not ask for, the so called “incidental findings” or “surprise discoveries”. The consequences of these supplementary detected mutations can vary from disorders with a mild pathological phenotype to severe illness. The wide spectrum of incidental findings and their different implications (chance of developing the disorder, pathological impact, time of onset, treatability, … of the disorder) raise the question of when incidental findings are good to know and when they better stay undisclosed. Incidental findings can be an opportunity for enhanced autonomy but can also lead to more heteronomy, where suddenly revealed risks turn a person’s life upside down and have a substantial impact on the future actions and decisions (s)he makes during his/her lifespan. Therefor we should raise the question when and how incidental findings do provide an opportunity for relevant and (in multiple meanings) useful knowledge and when they mainly generate uncertainty, resulting in fear and worries. Moreover, we should wonder who is qualified to make this distinction: patients themselves, who are probably most capable to evaluate their own situation or genetic experts and counselors, with education and expertise in interpreting incidental findings and their consequences? We will present the outline of our qualitative research project, in which we try to answer all of these questions, and we will illustrate its twofold design. On the one hand, we will empirically investigate the current practice, lived experiences of patients and advice of experts concerning genetic testing and the return of incidental findings in a clinical context. We will realize this by in-depth interviews with patients, physicians, genetic counselors, … On the other hand and by a more normative reflection, we want to consider these different perspectives in the context of ethical notions such as patient autonomy, personal responsibility and medical paternalism concerning genetic knowledge. This way, we want to contribute to the development of a best practice in one of the most challenging disciplines in current medicine." @default.
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• W3011906233 date "2016-01-01" @default.
• W3011906233 modified "2023-09-27" @default.
• W3011906233 title "Incidental findings : an opportunity for autonomy or a case of hidden heteronomy?" @default.
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