Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research: A Focus on the German Situation

in European Journal of Health Law
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Analyses of biobank informed consent forms show that most of them do not include provisions for post-mortem use of biomaterial and data obtained from a donor who later dies. When these biobanks are confronted with issues of secondary use of these bioresources for research, especially when not completely anonymised, or when genetic research is involved which could reveal not only the identity of the donor, but also those of his biological relatives, they are often confused. Looking at the existing regulatory framework of biobanks, we conclude that no clear guidelines exist on this issue. Although the donor has died, his interests are not completely extinguished. Other interests — those of his biological relatives, researchers, and the public at large may also crop up. Legal reform and clear indications of post-mortem use in the consent document are needed to give donors the opportunity to consider all the implications.

Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research: A Focus on the German Situation

in European Journal of Health Law

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References

9

U. Dammann in: S. Simitis (ed.)Kommentar zum Bundesdatenschutzgesetz (Frankfurt: M: Nomos2014) section 3 margin note 5.

19

Ibid. p. 15.

29

Ibid. pp. 22-23.

30

Estonian Personal Data Protection Act 2003Article 13.

47

Gola et al.supra note 42.

49

Buchnersupra note 42 section 3 margin note 9.

52

See also B. Spilker‘Postmortaler Datenschutz’DöV (2015) p. 54.

53

M. J. Heinemann and D. Heinemann‘Postmortaler Datenschutz’DuD (2013) 242-243; B. Beyerle Rechtsfragen medizinischer Qualitätskontrolle (Heidelberg: C.F. Müller 2004) 71-79; gmds Working Group on data protection and it-security in the health sector (gmds Arbeitsgruppe ‘Datenschutz und it-Sicherheit im Gesundheitswesen’) ‘Datenschutz bei Verstorbenen’ online at http://www.gesundheitsdatenschutz.org/doku.php/forschung-verstorbene retrieved 2 February 2016; T. Culmsee ‘Postmortaler Datenschutz und postmortale Datennutzung’ 2013 online at http://www.bartsch-rechtsanwaelte.de/media/docs/TC/Postmortaler%20Datenschutz.pdf retrieved 2 February 2016.

64

Hoppe and Kwisdasupra note 59.

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