Informational Self Determination, Right to Data Portability and Consent in Biobank Research: Is Research Possible Without Privacy Data Invasion?

Abstract

Biobanking functions within the Data Protection Regulation and EU legislation. Evaluation of data portability and informational self-determination and its impacts on the future of biobanking will be covered in the scope of the thesis. With all the discrepancies on consent and its evolution on sensitive data, there will be an evaluation of types of consent out there and their applicability and efficiency in the real sphere of biobanking. The target audience for the thesis are researchers, medical research professionals, and individuals in need of guidance for biobanking. The research is theoretical observed through EU legislation, national legislation and case studies. Recommendations from the study include strict supervision implementation when partnering with for profit companies or third parties on research projects, particularly being careful when a partnership between private and public sectors is initiated. The best suggestion in solving this problem is harmonization of the rights on storing and handling sensitive data. There should be a uniform rule on how private companies shall behave with such data. Adequate consent rights should be implemented with sensitive data. Lastly, there should be limitations or restrictions on compiling and using sensitive biological data.