Abstract
For this literature review, medical literature data bases were searched for studies on patient compliance after genetic risk assessment. The review focused on conditions where secondary or tertiary preventive options exist, namely cancer syndromes (BRCA-related cancer, HNPCC/colon cancer), hemochromatosis, thrombophilia, smoking cessation, and obesity. As a counterpart, patient compliance was assessed regarding medication adherence and medical advice in some of the most epidemiologically important conditions (including high blood pressure, metabolic syndrome, and coronary heart disease) after receiving medical advice based on nongenetic risk information or a combination of genetic and nongenetic risk information. In the majority of studies based on genetic risk assessments, patients were confronted with predictive rather than diagnostic genetic profiles. Most of the studies started from a knowledge base around 10 years ago when DNA testing was at an early stage, limited in scope and specificity, and costly. The major result is that overall compliance of patients after receiving a high-risk estimate from genetic testing for a given condition is high. However, significant behavior change does not take place just because the analyte is “genetic.” Many more factors play a role in the complex process of behavioral tuning. Without adequate counseling and guidance, patients may interpret risk estimates of predictive genetic testing with an increase in fear and anxiety.
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Acknowledgements
We are greatly indebted to Professor Heather Skirton, Leigh Jackson, and Lesley Goldsmith, Plymouth University, for helpful discussions and reading an earlier version of the manuscript. The main conclusions of this literature survey were first presented at the symposium “Predictive genetic testing, risk communication and perception” at the Robert-Koch-Institute Berlin, 21st November 2011.
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This article is part of the special issue “Predictive Genetic Testing, Risk Communication and Risk Perception”
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Schneider, K.I., Schmidtke, J. Patient compliance based on genetic medicine: a literature review. J Community Genet 5, 31–48 (2014). https://doi.org/10.1007/s12687-013-0160-2
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DOI: https://doi.org/10.1007/s12687-013-0160-2