Abstract
The use of genetic tests is expanding rapidly. Given limited health-care budgets throughout Europe and few national coverage decisions specifically for genetic tests, decisions about allocating scarce resources to genetic tests are frequently ad hoc and left to lower-level decision makers. This study assesses substantive ethical and economic criteria to prioritize genetic services in a reasonable and fair manner. Principles for allocating health-care resources can be classified into four categories: need-based allocation; maximizing total benefits; treating people equally; and promoting and rewarding social usefulness. In the face of scarcity, the degree of an individual’s need for medical intervention is an important criterion. Also, different economic concepts of efficiency are of relevance in the theory and practice of prioritizing genetic tests. Equity concerns are most likely to be relevant in terms of avoiding undesirable inequities, which may also set boundaries to the use of efficiency as a prioritization criterion. The aim of promoting and rewarding social usefulness is unlikely to be relevant to the question of what priority a genetic test should have in clinical practice. Further work is needed to select an appropriate set of criteria; operationalize them; and assign weights before some kind of standardized priority information can be added to information sources for genetic services. Besides the substantive criteria, formal considerations like those pointed out in the framework of accountability for reasonableness need to be considered in decision making.
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Acknowledgements
We acknowledge the comments from various colleagues, especially Per Carlsson, Jürgen John, Helena Kääriäinen, Alastair Kent, Michael Krawczak, Ulf Kristofferson and Irma Nippert. All errors of omission and commission remain our own. The study was partly supported by EuroGentest, an EU FP6 supported NoE Contract Number 512148 (EuroGentest Unit 3: Clinical genetics, community genetics and public health, Workpackage 3.2 (J Schmidtke)) and its successor EuroGentest2 (contract number 261469).
The findings and conclusions in this manuscript are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
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Rogowski, W., Grosse, S., Schmidtke, J. et al. Criteria for fairly allocating scarce health-care resources to genetic tests: which matter most?. Eur J Hum Genet 22, 25–31 (2014). https://doi.org/10.1038/ejhg.2013.172
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DOI: https://doi.org/10.1038/ejhg.2013.172
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