Data Protection
Genetics present a tremendous variety of possibilities for medical care offering a lot of hope for better patient-care. As vast amounts of all kinds of data need to be processed when genetic research is done and as the trials are so complex to build up it is in principle a good idea to share data and computer power in order to achieve common goals faster. But this is unfortunately only half the story.
The other half of the story is that genetic data are of an extremely sensitive nature. They can have impact on the patient's life and give important information not only about the person himself but also about relatives, who might not even be born yet! Needless to say that every employer, every insurance company and every state prosecutor would be happy to have access to such data...
Several issues arise here. First, from the legal perspective, the right to privacy is a fundamental human right that has to be protected. Never may this sensitive data become the object of misuse.
Second, from the scientific perspective, if patients suspect that their personal data they agreed to share for medical care and research work may be used for other purposes (and it is quite irrelevant whether this other purpose is a legal or illegal one) they will simply refuse to allow access, creating an obstacle for further research.
Third, from a medical perspective, simply anonymizing the data and processing it without bothering about the patients does not provide a real solution. Patients have a legally and ethically guaranteed right to be informed, especially if the research done with their data leads to a result with a possible impact on their disease.
From its inception, ACGT has identified these issues and has set up a strong legal and ethical team that closely cooperates with the persons in charge for IT-security in the project. Full compliance of ACGT with all legal and ethical regulations is the first goal of this group and is reflected in the whole ACGT-architecture itself.
This is an important differentiator and asset of the project since partners, doctors and patients can base their work on a clearly defined legal framework. This is also an important contribution to the wider e-health community since the solutions found in ACGT will be adaptable and usable by many other projects in the ICT for health space.