Ethical concerns caused by integrative patient empowerment solutions for personalized medicine

Abstract

Personalized medicine that promises targeted treatments with high therapeutic effectiveness requires an unmatched degree of participation of the patient. To enable this high degree of patient empowerment, the project p-medicine developed a Patient Empowerment Tool that is part of a clinical research infrastructure consisting of data management, data warehouse, biobank access, imaging, simulation and decision support tools. Patient autonomy is enhanced by giving patients access to their data and by providing means for informed choices and consent. Because the highly integrative nature of the Patient Empowerment Tool raised ethical concerns, an ethical requirements analysis was carried out, resulting in the assignment of five ethical clusters. The one concerned with the Patient Empowerment Tool was used to identify several concerns, like the access to unfavorable information or negative diagnosis, incomprehensible risk/benefit display, and other factors that may overstress certain patients. From the ethical point of view, the user interface should contain different profiles and control mechanisms to protect the patient and to provide an adaptable and intelligent display of information, sufficient guidance and help for users from vulnerable populations as well as for patients with life threatening diseases.

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