Abstract
Biobanks are essential instruments of medical research. It is important for biobanks that freedom of research and the protection of health, which can only be achieved if medicine continues to develop, are guaranteed at the national, supranational and international level. The activities of biobanks are in normative tension with the protection of personal data, especially as formulated by the EU’s General Data Protection Regulation. Both parts of the guarantee must be reconciled, in the sense of optimal concordance being achieved. On this basis, common principles have emerged in Europe which comply with the important imperative of data protection but also take the legitimate interests of medical research seriously.
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Notes
- 1.
See also Bundesärztekammer, Bekanntmachungen, Medizinische, ethische und rechtliche Aspekte von Biobanken, in: Deutsches Ärzteblatt 15.12.2017. doi: 10.3238/arztebl.2017.biobanken_01, p.A1 – A7, A5.
- 2.
See, for example, Recommendation No. R (83) 10 on the protection of personal data used for scientific research and statistics.
- 3.
Loizidou v. Turkey (Preliminary Objections) (Application no. 15318/89), Judgment 23 March 1995, para. 75.
- 4.
For more on the idea of ‘broad consent’, see https://www.medizininformatik-initiative.de/de/mustertext-zur-patienteneinwilligung.
- 5.
FCC http://www.bverfg.de/e/fs19991111_2bvf000298.html, para. 281.
- 6.
The exception is the so-called constitutional identity equated by the FCC with the matters exempted from constitutional reform (Article 79.3 Grundgesetz (Basic Law, BL), FCC http://www.bverfg.de/e/es20090630_2bve000208en.html (English translation by the FCC), paras. 218, 219, 239, 240 etc.
- 7.
See note 2 and Recommendation CM/Rec(2019)2, p. 19 et seq.
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Arnold, R. (2023). Medical Research and Data Protection in Europe. The Emergence of General Legal Principles. In: Colcelli, V., Cippitani, R., Brochhausen-Delius, C., Arnold, R. (eds) GDPR Requirements for Biobanking Activities Across Europe. Springer, Cham. https://doi.org/10.1007/978-3-031-42944-6_2
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