Implementation of personalized medicine in Central-Eastern Europe: pitfalls and potentials based on citizen's attitude

EPMA J. 2018 Feb 9;9(1):103-112. doi: 10.1007/s13167-017-0125-3. eCollection 2018 Mar.

Abstract

Objective: Next-generation sequencing is increasingly utilized worldwide as a research and diagnostic tool and is anticipated to be implemented into everyday clinical practice. Since Central-Eastern European attitude toward genetic testing, especially broad genetic testing, is not well known, we performed a survey on this issue among Hungarian participants.

Methods: A self-administered questionnaire was distributed among patients and patient relatives at our neurogenetic outpatient clinic. Members of the general population were also recruited via public media. We used chi-square testing and binary logistic regression to examine factors influencing attitude.

Results: We identified a mixed attitude toward genetic testing. Access to physician consultation positively influenced attitude. A higher self-determined genetic familiarity score associated with higher perceived genetic influence score, which in turn associated with greater willingness to participate in genetic testing. Medical professionals constituted a skeptical group.

Conclusions: We think that given the controversies and complexities of the next-generation sequencing field, the optimal clinical translation of NGS data should be performed in institutions which have the unique capability to provide interprofessional health education, transformative biomedical research, and crucial patient care. With optimization of the clinical translational process, improvement of genetic literacy may increase patient engagement and empowerment.

Relevance of the article for predictive preventive and personalized medicine: The paper highlights that in countries with relatively low-genetic literacy, a special strategy is needed to enhance the implementation of personalized medicine.

Keywords: Counseling; Direct to consumer genetic tests; Ethic; Genetic literacy; Hungary; Next-generation sequencing; Predictive genetic tests; Predictive preventive personalized medicine; Survey.