Genetic data instead of a personal interview? "

"Personalized Medicine" – one of the most important future medical trends according to some experts – is a misleading term. In general, this involves individual circumstances of patients undergoing medical treatment. A primarily desirable approach that would include mental and social needs and characteristics.

In the strictest sense, however, where the term is used primarily, personalized medicine involves using the measurable biological characteristics of the patient (called biomarkers) as the basis for diagnosis, therapy, or counseling, including, but not limited to Limit, genetic traits. The focus is therefore not on the biographical or specific characteristics of a patient, but on its individual biological structures.

"Personalized medicine is a digital medicine based on algorithms," says Barbara Prainsack, a university professor of comparative policy analysis, in the Podim "Audimax" of the University of Vienna. The political scientist, who published last year a comprehensive monograph on personalized medicine, criticizes some of the great promises of this vision. As an example, she cites Britain, whose former Health Secretary, Jeremy Hunt, is heavily focused on personalized medicine – with the result that the country will probably invest in computers rather than doctors. Value-based health system funding, based not only on medical interventions but on the result achieved, is therefore excluded.

Prainsack is represented in a number of ethical councils, such as the Austrian Bioethics Commission and the European Group on Ethics in Science and New Technologies. From an ethical point of view, in addition to the issue of personalized medicine based on values, their treatment of patient data must also be discussed and politically regulated.

Publish your own DNA

The researcher is currently leading the German-speaking part of the international study "Your DNA, Your Say", which she co-designed. The online survey, open to the public, will be conducted in eleven languages. We are currently studying the type of interaction that citizens with their genetic data and other health data can imagine or wish: for example, if they would be willing to put their own DNA and other medical data for research purposes, so that scientific benefits may result. Or, they are aware of the risks associated with misuse of the data and under what conditions they would be willing to provide their genetic data or DNA to doctors, to community or commercial research.

The sample of English-speaking respondents from the United Kingdom, the United States, Canada and Australia (totaling nearly 9,000 people) has already been evaluated. In collaboration with Toronto sociologist Torsten Voigt, Barbara Prainsack is currently analyzing the data of a few thousand respondents in the German sample. "The first results indicate very interesting differences from the study in English – the fact that the debate on genetics – especially with regard to genetically modified organisms – in the German-speaking world has been much more violent than in the past." 39, elsewhere, may have played here, "says Prainsack. Other qualitative studies have already shown that in Germany, the discussion of the so-called green genetics, namely the use of genetically modified seeds in agriculture, had apparently led to a very critical attitude to regarding human genetics.

Presumably, the opinions thus obtained will amply corroborate the concerns of values-based medicine. However, how to measure the values ​​in order to eventually create the paradigm shift from a volume-based system to a values-based system is an issue that will be addressed from next year to the group of Prainsack interdisciplinary research, Contemporary Solidarity Studies.

("Die Presse", printed edition, 20.07.2019)