Details
| Original language | English |
|---|---|
| Pages (from-to) | 311-327 |
| Number of pages | 17 |
| Journal | European Journal of Health Law |
| Volume | 24 |
| Issue number | 3 |
| Publication status | Published - 31 May 2017 |
Abstract
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.
Keywords
- biobank framework, data protection, informed consent, post-mortem bioresources
ASJC Scopus subject areas
- Medicine(all)
- Health Policy
- Social Sciences(all)
- Law
Sustainable Development Goals
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In: European Journal of Health Law, Vol. 24, No. 3, 31.05.2017, p. 311-327.
Research output: Contribution to journal › Review article › Research › peer review
}
TY - JOUR
T1 - Legal Perspectives on Post-mortem Use of Biomaterial and Data for Research
T2 - A Focus on the German Situation
AU - Hänold, Stefanie
AU - Forgó, Nikolaus
AU - Kobeissi, Dania
AU - Nwankwo, Iheanyi
N1 - Publisher Copyright: © 2016 Koninklijke Brill NV, Leiden, The Netherlands.
PY - 2017/5/31
Y1 - 2017/5/31
N2 - 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.
AB - 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.
KW - biobank framework
KW - data protection
KW - informed consent
KW - post-mortem bioresources
UR - http://www.scopus.com/inward/record.url?scp=85020447965&partnerID=8YFLogxK
U2 - 10.1163/15718093-12341415
DO - 10.1163/15718093-12341415
M3 - Review article
AN - SCOPUS:85020447965
VL - 24
SP - 311
EP - 327
JO - European Journal of Health Law
JF - European Journal of Health Law
SN - 0929-0273
IS - 3
ER -