Genetic Testing: Quality Standards for Patient Information
EuroGentest is a Network of Excellence funded by the European Commission to develop quality standards on genetic testing. Unit 6 of the NoE focuses on information to patients and families and professional education. It aims to develop systematic guidance to professionals generating information about genetic testing for patients, and to empower patients to secure the information they need for making informed choices.
Patients and professionals need to know that the occasion of a clinical encounter is capable of delivering maximum benefit to those affected or at risk from genetic disorders. By developing on systematic understanding of what families need in order to understand their circumstances and how best to meet these needs scarce resources can be used efficiently and effectively. In seeking to establish information parameters the skills and knowledge of patients and families overlap substantially with those as professionals and a partnership approach, with purity of esteem has delivered clear benefit in creating a framework for evaluating patient information and specifying professional educational needs. Indeed in developing the framework it is not possible to identify patient or professional inputs so great is the commodity of understanding and sharing of skills and knowledge.
This process and the resulting framework will be presented.
EUROGENTEST, Unit 6, Education, European Community Project Contract no.: FP6-512148