Biobanks – Data Sources without Limits?
The combination of health and lifestyle data with bodily substances and genetic information has led over the last few years to the creation of so-called biobanks. These biobanks are used to research a large number of diseases of modern civilization and genetic interactions. The interest of researchers in a preferably unrestricted right to data usage clashes with the personality rights of data subjects. What restrictions should be imposed on data use, and how can this be done without rendering research activity impossible? Balancing interests – considerations from a data protection perspective.
Table of contents
- I. Introduction
- II. The issue of consent
- III. Anoymization and encoding of donor data and samples
- IV. Data access by third parties
- V. Building trust through a research confidentiality policy
- VI. Conclusions
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