Workpackage 6 Priority setting in genetic testing

Frequently, the benefit from a genetic test is difficult to establish by standard methods, because it is at least partially personal rather than clinical – e.g. in the case of a genetic test for Huntington’s disease which is highly relevant to the patient but does not improve health outcomes like life-years gained. Faced with limited resources, it is unclear how decision makers should account for these other benefits in the prioritization of genetic (see Rogowski et al. 2009).

The aim is to develop a tool for prioritizing genetic tests, for public health care payers and other stakeholders, e.g. in the form of a set of ranking criteria and weights attached to them.

Clearly, the prioritization of resources is in the remit of those whose resources are prioritized – thus, third party payers throughout Europe. Nevertheless, decision makers still encounter situations where prioritization criteria are not sufficiently defined, especially in the case of local and regional budgets for genetic services. This underlines the need for guidance for these situations to complement national regulation as well as to support European third party payers’ decisions about novel coverage rules, aiming at harmonization both on a local and a national policy level. To enhance the legitimacy of the guidance on prioritizing genetic tests, the process of developing prioritization criteria will follow the principles of “Accountability for Reasonableness”, a framework for procedural justice in health care decision making. Key elements of this decision process have been developed during the EuroGentest NoE. The work is preceded by a survey among decision makers about criteria currently used in practice as well as by a survey among patients in Europe about their experiences with prioritization and criteria acceptable to them. Using the Genetic Interest Group’s network ensures that the patient perspective throughout Europe is included in this process.


WPLeaders: Wolf Rogowski, Alastair Kent (Céline Lewis)

Participants: Lyn Chitty, Bert Bakker, Katherine Payne


28-29 November 2012 a workshop is planned on this topic. Click here for more information.

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