My Data, My Choice? – German Patient Organizations’ Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study

AbstractPersonalized medicine (PM) operates with biological data to optimize therapy  or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data (‘volume’) from various sources (‘variety’) and varying quality in terms of data accuracy (‘veracity’) to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period (‘velocity’) to provide insights into previously unknown connections and correlations between different items (‘value’). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations an d approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephon e-interviews for gaining in-depth insight into German POs’ perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement...
Source: Journal of Medical Systems - Category: Information Technology Source Type: research