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Privacy Laws and Biobanking in Germany

Published online by Cambridge University Press:  01 January 2021

Nils Hoppe
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Abstract

While the possibility of enacting a sui generis Biobank Act has been debated in Germany at great length, as of yet the country has not implemented any biobankspecific legislation. Instead, oversight is available via a network of research and privacy laws, including those of the European Union. The Nationale Kohorte, Germany's large-scale, population-based epidemiological research biobank, is funded by the Federal Ministry of Education and Research, and there are currently 108 registered bio-banks throughout Germany. The current system, including the structure and study design of the Nationale Kohorte, privileges the protection of personal information even at the cost of socially desirable research; it remains to be seen if forthcoming legislation will shift this balance.

Type
Symposium Articles
Information
Journal of Law, Medicine & Ethics , Volume 44 , Issue 1: Part II: Harmonizing Privacy Laws to Enable International Biobank Research , Spring 2016 , pp. 35 - 44
Copyright
Copyright © American Society of Law, Medicine & Ethics 2016

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References

Volkszählungsurteil, BVerfG, 15.12.1983, Az. 1 BvR 209, 269, 362, 420, 440, 484/83.Google Scholar
Statistiches Bundesamt, available at <https://www.destatis.de/DE/ZahlenFakten/GesellschaftStaat/Bevoelkerung/Bevoelkerungsstand/Tabellen/Zensus_Geschlecht_Staatsangehoerigkeit.html> (last visited February 3, 2015).+(last+visited+February+3,+2015).>Google Scholar
Frerich, J. and Frey, M., Handbuch der Geschichte der Sozialpolitik in Deutschland (Munich: Oldenbourg, 1993): at 95–99.Google Scholar
Taken from Info Santésuisse, available at <http://www.santesuisse.ch/user_content/files/infosantesuisse_dossiers/13_europe_iss3_2010_d_20110324083956.pdf> (last visited January 25, 2016).+(last+visited+January+25,+2016).>Google Scholar
Figures from s. 8.1 of Daten des Gesundheitswesens (2013), available at <https://www.bundesgesundheitsministerium.de/fileadmin/dateien/Publikationen/Gesundheit/Broschueren/Daten_des_Gesundheitswesens_2013.pdf> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
§5 Abs. 1 No. 2a SGB V (Social Security Act).Google Scholar
European Commission, “Rare Diseases,” available at <http://ec.europa.eu/health/rare_diseases/policy/index_en.htm> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Statistiches Bundesamt, “Colleges Total,” available at <https://www.destatis.de/DE/ZahlenFakten/GesellschaftStaat/BildungForschungKultur/Hochschulen/Tabellen/HochschulenHochschularten.html> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
ÄrzteZeitung, “Koalition lehnt Biobanken-Gesetz ab,” available at <http://www.aerztezeitung.de/politik_gesellschaft/medizinethik/article/807325/koalition-lehnt-biobankengesetz-ab.html> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Radner, K. et al., “RPG 2007 10,” quoted in Deutsch, E. and Spickhoff, A., Medizinrecht (Springer: Heidelberg, 2008): at 165.Google Scholar
Sheehan, M., “Can Broad Consent Be Informed Consent?” Public Health Ethics 4, no. 3 (2011): 226–235.Google Scholar
Christliche-Kkrankenhaeuser, “What We Stand For,” available at <http://www.christliche-krankenhaeuser.de/#/wer-wirsind> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Directive 95/46/EC of the European Parliament and of the Council of October 24, 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data (Official Journal L 281, 23/11/1995 P. 0031 - 0050).Google Scholar
Art. 25 of the draft General Data Protection Regulation, available at <http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2012:0011:FIN:en:PDF> (last visited January 26, 2016). The phrasing has survived all amendments since 2012.+(last+visited+January+26,+2016).+The+phrasing+has+survived+all+amendments+since+2012.>Google Scholar
Deutsches Biobanken Register, “Biobanks,” available at <http://dbr.biobanken.de/de/web/guest/bdb/> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Simon, J. W. et al., Biomaterialbanken (Berlin: MWV, 2006).Google Scholar
See, for example, Thieme ProCompliance, which provides more than 2,000 individual informed consent packages, available at <http://www.procompliance.de> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
S. and Marper v. The UK [2008] ECHR 1581, (2009) 48 EHRR 50, 25 BHRC 557, 48 EHRR 50, [2009] Crim LR 355, available at <http://hudoc.echr.coe.int/sites/eng/pages/search.aspx?i=001-90051> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Id., at 75.Google Scholar
OECD: Recommendation of the Council Concerning Guidelines Governing the Protection of Privacy and Transborder Flows of Personal Data of September 23, 1980, available at <http://www.oecd.org/sti/ieconomy/oecdguidelinesontheprotectionofprivacyandtransborderflowsofpersonaldata.htm> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Council of Europe, Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data, available at <http://conventions.coe.int/Treaty/en/Treaties/Html/108.htm> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
Forgó, N. et al., Ethical and Legal Requirements for Transnational Genetic Research (Munich CH Beck, 2010): No. 245.Google Scholar
BVerfG, Urteil v. 15.12.1983, Az. 1 BvR 209, 269, 362, 420, 440, 484/83.Google Scholar
See Deutsch and Spickhoff, supra note 10, at 385.Google Scholar
Id., at 616.Google Scholar
See National Human Genome Research Institute, “DNA Sequencing Costs,” available at <https://www.genome.gov/sequencingcosts/> (last visited January 26, 2016).+(last+visited+January+26,+2016).>Google Scholar
See Forgó, supra note 22, at 269.Google Scholar
Fried, C., “Privacy - A Moral Analysis,” Yale Law Journal 77, no. 3 (1968): 475-493, at 485.CrossRefGoogle Scholar