Genetic data in daily medical practice
Individuals react differently to drugs. In some people a drug is broken down too quickly, making it ineffective, in others it is broken down too slowly, which can lead to (serious) side effects. These differences are largely due to variations in the hereditary material, the DNA.
For about 150-200 different medicines there are therefore guidelines that indicate how the medication and dosage should be adjusted based on the DNA profile of a patient: personalized medication ('personalized medicine'). When treating colon cancer, patients are tested as standard and the dose of capecitabine is adjusted according to the guidelines.
For many other medicines, the available guidelines are not yet used, not even for patients for whom a pharmacogenetic DNA profile is already available, for example from the DNA diagnostics, or when patients have had their DNA profile determined by a commercial company.
DNA Data safe
This project aims to develop a personal DNA data safe together with patients, professionals and other stakeholders. The DNA data safe is a secure environment in which people can store, view, interpret and share DNA profiles with healthcare providers and researchers. We are investigating how the DNA data safe can be integrated into a number of existing patient portals or personal health environments.
Furthermore, we aim to share the DNA data relevant for prescribing medicines with healthcare providers so that they can adapt their medication according to existing pharmacogenetic guidelines. This will increase the effectiveness of drug use and prevent undesirable side effects. Finally, the personal DNA data safes will connect to the Personal Health Train, an infrastructure currently being built by various public and private partners, some of whom are involved in this proposal. In this infrastructure, data can be used for research (for example for research into the effects and side effects of medicines) without the data leaving the safe, by asking questions to the data and giving the answers back to the researchers. This makes research with privacy-sensitive data a lot less risky and also gives the individual the possibility to decide for himself which research he will or will not participate in.
The project answers real computer science research questions, but also questions related to the interaction of the user with the software and the user interface of the DNA data safe.
Concrete end products of the project are: lists of technical and end user requirements for the DNA data safe, recommended technical standards for the DNA data safe, recommendations for the optimization of the use and usefulness of the DNA data safe, and a working prototype of a DNA data safe that has been tested in practice and can be further developed into a professional software package.
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