Biobanking: International Norms
While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and...
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| Published in | The Journal of law, medicine & ethics Vol. 33; no. 1; pp. 7 - 14 |
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| Main Author | |
| Format | Journal Article |
| Language | English |
| Published |
Oxford, UK
Blackwell Publishing Ltd
22.03.2005
SAGE Publications Sage Publications, Inc Cambridge University Press |
| Subjects | |
| Online Access | Get full text |
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| Abstract | While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. |
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| AbstractList | While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. [...]the trend is moving towards permitting research on archived medical care samples without reconsent, subject to ethics approval, if such samples are either anonymized or exceptionally, if coded, provided there are important health interests, there is notification of such a practice, and, no objection. Research Samples In regards to samples and data collected for a specific research project that are to be used subsequently for other research purposes, the CIOMS specifies that subsequent research be circumscribed by the original consent, and that any conditions specified in that initial consent apply equally to secondary uses.20 It affirms the critical need for anticipation of future uses when samples and data are first collected. [...]investigators should, during the original consent process, inform potential participants about any foreseen secondary uses, privacy protection or destruction procedures that will be implemented, and of their rights to request destruction of any material or information they deem sensitive, or to opt out in advance of such secondary research.21 UNESCO's 2003 Declaration on Human Genetic Data holds that, health emergencies excepted, secondary uses incompatible with the conditions set out in the initial consent to research cannot proceed without a renewed consent.22 Thus, a contrario, when secondary research uses involve related conditions (i.e. compatible) or, the description of the original research was for long-term biobanking and genetic epidemiology studies generally (i.e. with no specific research hypothesis), re-consent would not be necessary. Yet, while international bodies are more explicit in their guidance on "genetic" data, confusion still reigns due to the use of different taxonomies and overall, the failure to anticipate the need for rules for population biobanks and ongoing longitudinal studies. [...]the terminology used to describe samples and data is still confusing and there is no clarity. [...]the trend is moving towards permitting research on archived medical care samples without re-consent, subject to ethics approval, if such samples are either anonymized or exceptionally, if coded. |
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| Author | Knoppers, Bartha Maria |
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| Cites_doi | 10.1007/978-3-642-73656-8 10.1111/j.1467-8519.2004.00377.x |
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| SubjectTerms | Biotechnology Commercialization DNA identification DNA testing European Union Evaluation Gene banks Genetic research Genome, Human Government regulation Human genome Human Genome Project Humans Internationality Laws, regulations and rules Terminology as Topic Tissue banks Tissue Banks - ethics Tissue Banks - trends |
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| Title | Biobanking: International Norms |
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