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2 Studia Iuridica

2 2018

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Anonimizacja w dobie wielkich danych – sytuacja biobanków w kontekście RODO

100%

Marciniak B. , Topolski P. , Strapagiel D.

Studia Iuridica

2018

tom 73

73-85

Technological development increased abilities of data analysis collecting gathering and obtaining from wide range of sources including national health registries. Aim of, entering into force on May 2018, General Data Protection Regulation (GDPR) is to regulate analysis of wide range of personal data from profiling to healthy issues. New regulations may hamper the implementation of research, or realization of projects under Horizon 2020 or Digital Poland, that based on data sharing. In order not to waste the opportunities and benefits for humanity that modern technology and „open data” can bring, appropriate measures must be taken to protect the privacy of individuals. But then there is next trap. The more data is protected in the context of privacy protection, the less useful they are for scientific purposes. The key point is to find right balance between security and usability.

Biobankowanie ludzkiego materiału biologicznego dla celów naukowych w Polsce i w Europie

51%

Kozera Ł. , Strapagiel D. , Gleńska-Olender J. , Chrościcka A. , Ferdyn K. , Skokowski J. , Kalinowski L. , Pawlikowski J. , Marciniak B. , Pasterk M. , Matera-Witkiewicz A. , Lewandowska-Szumieł M. , Piast M. , Witoń M.

Studia Iuridica

2018

tom 73

13-28

Biobanks are one of the 10 Ideas Changing the World Right now – according to Time Magazine (2009). Samples and data deposition have become an increasing. trend in the world. Europe has invested a lot of money into infrastructures responsible for collection and storage of human biological samples. Poland, a country with a population of over 38.5 million people has just started investing funds into this powerful and indispensable tool for scientific research. Consortium of Polish Biobanks named as BBMRI.pl consisting of seven well-established biobanks developed a project for the Creation of the Polish Biobanking Network in order to organise our infrastructures according to world-recognized standards. The main tasks include: creation of Consortium of Polish Biobanks, development of IT solutions coherent with pan European needs, development of quality assurance tools, establishment of the Biobanking National Node, development of quality control programme and analysis of Ethical, Legal and Social Implications of research using human samples. Results of this project will increase Poland’s position in the international research arena of biomedicine, make our biorepositories open for international collaboration and in the future will contribute to the development of personalized medicine.