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Regulating Privacy and Biobanks in the Netherlands

Published online by Cambridge University Press:  01 January 2021

Aart C. Hendriks  and
Rachèl E. van Hellemondt
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Abstract

The Netherlands does not have any specific legislation pertaining to human biological materials and data collection by biobanks. Instead, these issues are governed by a patchwork of laws, codes of practices, and other ethical instruments, where special emphasis is given to the right to privacy and self-determination. While draft legislation for biobanking was scheduled to enter into force in 2007, as of mid-2015 such legislation was still under consideration, with the intent that it would focus particularly on individual self-determination, the interests of research, the use of bodily materials collected by biobanks for criminal law purposes, and dilemmas around results that are clinically relevant for biobank participants. Under the current framework, the amount of privacy protection afforded to data is linked to its level of identifiability. International sharing of personal data to non-EU/European Economic Area countries is allowed if these countries provide adequate protection.

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. 68 - 84
Copyright
Copyright © American Society of Law, Medicine & Ethics 2016

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References

Kamerstukken II (parliamentary papers II) 2014/15, 34 000 XVI, no. 113.Google Scholar
International Monetary Fund World Economic Outlook, April 2015.Google Scholar
Wetenschappelijke Raad voor het Regeringsbeleid, Identificatie met Nederland (Amsterdam: University Press, 2007), available at <http://www.wrr.nl/fileadmin/nl/publicaties/PDFRapporten/Identificatie_met_Nederland.pdf> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Toebes, B. and Giorgi, M. San, “Dutch Realities: Evaluating Health Care Reform in the Netherlands from a Human Rights Perspective,” in Ferguson, R., Markovic, M. M. and Nnamuchi, O., eds., The Right to Health: A Multi-Country Study of Law, Policy and Practice (The Hague: TMC Asser Press, 2014): 403–436.Google Scholar
Björnberg, A., Euro Health Consumer Index 2014, Report no. 2015-01-27 (Täby: Health Consumer Powerhouse, 2015), available at <http://www.healthpowerhouse.com/index.php?Itemid=55> (last visited February 9, 2016).Google Scholar
S. and Marper v. the United Kingdom, ECtHR (GC), no. 30562/04 and no. 30566/04 (4 December 2008), para. 77.Google Scholar
Zoontjes, P., Vrijheid van Wetenschap: Juridische Beschouwingen over Wetenschapsvrijheid en Hoger Onderwijs (Zwolle: W.E.J. Tjeenk Willink, 1993) and AAAS Science and Human Rights Coalition, Defining the Right to Enjoy the Benefits of Scientific Progress and Its Applications: American Scientists’ Perspectives (Report prepared by M. Weigers Vitullo and J. Wyndham), October 2013. DOI: 10.1126/srhrl.aaa0028, also available at <http://www.aaas.org/sites/default/files/content_files/UNReportAAAS.pdf> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Kamerstukken II (parliamentary papers II) 2014/15, 34 000 XVI, no. 106.Google Scholar
Recommendation Rec(2006)4 of the Committee of Ministers to Member Stateson Research on Biological Materials of Human Origin, available at https://wcd.coe.int/ViewDoc.jsp?id=977859 (last visited February 9, 2016).Google Scholar
See Commissie Doek, Advies Medisch Wetenschappelijk Onderzoek met Kinderen (November 2009), attachment Kamerstukken II (parliamentary papers II) 2009/10, 32 123 XVI, no. 87, available at <https://zoek.officielebekendmakingen.nl/kst-32123-XVI-87.html> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
WMA Declaration Helsinki - Ethical Principles for Medical Research Involving Human Subjects (1964, last revised 2013), available at <http://www.wma.net/en/30publications/10policies/b3/> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Harris, J., “Scientific Research Is a Moral Duty,” Journal of Medical Ethics 31, no. 4 (2005): 242–248.Google Scholar
van der Valk, T., “Zeggenschap over Lichaamsmateriaal: Suggesties vanuit Europa,” Tijdschrift voor Gezondheidsrecht (2010): 562–563.Google Scholar
Bovenberg, J., “Property Rights in Blood, Genes & Data: Naturally Yours?” (Ph.D. thesis Leiden University, 2000) and M.C. Ploem, “Het verschijnsel biobanking in privacyperspectief,” Computerrecht (2011): 320-328. See also Parillo v. Italy, ECtHR (GC), no. 46470/11, (27 August 2015).Google Scholar
van Beers, B. C., Persoon en Lichaam in Het Recht: Menselijke Waardigheid en Zelfbeschikking in Het Tijdperk van de Medische Biotechnologie (Den Haag: Boom Juridische uitgevers, 2009) and A. C. Hendriks, B. J. M. Frederiks and M. A. Verkerk, “Het Recht op Autonomie in Samenhang met Goede Zorg Bezien,” Tijdschrift voor Gezondheidsrecht (2008): 2–18.Google Scholar
Olsthoorn, E. T. M., Lichaamsmateriaal Voor de Wetenschap (Utrecht: VGR, 1995).Google Scholar
Boeckhout, M., van Dijk, J. and Legemate, D. A., “Toetsing van Biobanken: Lessen uit het Parelsnoer Initiatief,” Nederlands Tijdschrift voor Geneeskunde 155 (2011): A3557.Google Scholar
Koninklijke Nederlandse Akademie van Wetenschappen, Multifactoriële Aandoeningen in het Genomics-Tijdperk (Amsterdam: KNAW, 2006): 50–51.Google Scholar
Decision 2013/701/EU of the European Commission: Bio-banks (and Biomolecular Resources Centres), Official Journal of the European Union, 30.11.2013, L 320/1.Google Scholar
More for information about this organization is available at <http://www.rivm.nl/en> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More for information about this organization is available at <http://www.nki.nl> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More for information about this organization is available at <http://www.sanquin.nl/en/donate-blood/about-the-blood-bank> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Rothstein, M. A. and Knoppers, B. M., “Introduction,” Journal of Law, Medicine & Ethics 35, no. 1 (2005): 6.Google Scholar
More information available at <http://www.palga.nl/en/about-stichting-palga> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
See <http://www.rivm.nl/en/Topics/H/Heel_prick>(last visited February 9, 2016).(last+visited+February+9,+2016).>Google Scholar
See <http://www.rivm.nl/Onderwerpen/H/Hielprik/Juridische_informatie#gegevens> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More information available at <http://www.skionlaterstudie.nl/english> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More information available at <http://www.ergo-onderzoek.nl/wp> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More information available at <https://www.lifelines.nl/home> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More information at <http://www.nesda.nl/nl/> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
More information available at <http://en.parelsnoer.org/> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
See <http://www.bbmri.nl/nl-nl/over-bbmri-nl/partners> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
See <http://www.bbmri.nl/nl-nl/biobanken-database> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
See <https://www.umcutrecht.nl/getmedia/4b34381a-c064-4037-ac32-30a43760823e/Biobank_Regulations_UMCU-trecht.pdf.aspx> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Gerards, J. H., “General Issues Concerning Genetic Information,” in Gerards, J. H., Heringa, A. W. and Janssen, H. L., eds., Genetic Discrimination and Genetic Privacy in a Comparative Perspective (Antwerp: Intersentia, 2005): 5–26.Google Scholar
Code Goed Gebruik (2011). An English version of the code is available at https://www.federa.org/codes-conduct (last visited February 9, 2016).Google Scholar
Coebergh, J. W., van Veen, E. B., Vandenbroucke, J. P., van Diest, P. and Oosterhuis, W., “One-time General Consent for Research on Biological Samples: Opt Out System for Patients Is Optimal and Endorsed in Many Countries,” British Medical Journal 332, no. 7542 (2006): 665; and P. J. van Diest, “No Consent Should Be Needed for Using Leftover Body Material for Scientific Purposes,” British Medical Journal 325, no. 7365 (2002): 648–51.Google Scholar
See Bovenberg, , supra note 14.Google Scholar
See Code Goed Gebruik van Lichaamsmateriaal, supra note 36.Google Scholar
Code of the String of Pearls, available at <http://www.parelsnoer.org/page/Patienten/Privacy-rechten> (last visited February 9, 2016); Code of Lifelines (2013) available at <https://www.lifelines.nl/upload/file/privacyreglement+lifelines+-+definitief+1.0.pdf> (last visited February 9, 2016); code of PALGA (2012) available at <http://www.palga.nl/assets/uploads/Patienten/pathologiedef2012_DEF_WEBSITE_15febr12.pdf> (last visited February 9, 2016).+(last+visited+February+9,+2016);+Code+of+Lifelines+(2013)+available+at++(last+visited+February+9,+2016);+code+of+PALGA+(2012)+available+at++(last+visited+February+9,+2016).>Google Scholar
den Hertog-de Visser, A. M., “Wetenschappelijk Onderzoek,” in Hendriks, A. C. and Blondeau, M. J. C. E. eds., Bestuursrechtelijk Gezondheidsrecht (Deventer: Kluwer, 2015): 317-346, at 344).Google Scholar
Letter from the State Secretary of Health to all recognised METCs regarding human tissues, 11 June 2009, reference PG/E 2923685, available at <www.rijksoverheid.nl/bestanden/documenten.../brief.../br-2923685.pdf> (last visited February 9, 2016).+(last+visited+February+9,+2016).>Google Scholar
Boeckhout, et al., supra note 17.Google Scholar
Broersen, S. F. M., “Stukjes Mens in de Vriezer,” Medisch Contact 23 (2010): 1042–1045.Google Scholar
Ploem, , supra note 14 and Bovenberg, supra note 14.Google Scholar
Bovenberg, J. et al., Should Unexpected Research Outcomes Be Communicated? Always Expect the Unexpected. Legal and Social Aspects of Reporting Biobank Research to Individual Research Participants (Nijmegen: Centre for Society and Genomics, 2009); J. Bovenberg et al., “Biobank Research: Reporting Results to Individual Participants,” European Journal of Health Law 16, no. 3 (2009): 229–247.Google Scholar
Kranendonk, E. J., “Kind en Biobank: Enkele Juridische Aspecten,” Tijdschrift voor Gezondheidsrecht 37 (2013): 267–280.Google Scholar
Ploem, , supra note 14.Google Scholar
Pretty v. the UK, ECtHR, no. 2346/02, (29 April 2002), para. 61.Google Scholar
Van der Valk, , supra note 13.Google Scholar