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Contains pages. Storing human tissues to support research has been an important recent advance. This book brings together international views about three aspects of the ethics of storing tissues in biobanks. The 4 editors have involved 5 other experts in writing the 16 chapters. A feature of several national legislations is that human body and tissue material cannot be owned or sold.

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Haga and Beskow , p noted that a Florida court in Greenberg v. Private benefits are then not available for participants, but there may be either research results or incidental findings that may be of interest to them. Information about research results of a biobank study is made available through publication in scientific journals. Specific information to individual donors is generally not advisable as it implies assuming a responsibility for the clinical significance for an individual based on information about the odds ratio expressing risk only for a study population. Research groups may not be equipped for assuming such a responsibility.

Communicating genetic information implies skills in genetic counselling and the information may be of direct concern to genetic relatives who also must be informed. This is particularly true if no relevant treatment or prevention modality to combat the investigated risk is yet available' Helgesson et al , , p If clinically significant findings are expected to emanate from the research, this implies that a close collaboration has to be set up from the start together with clinical departments and wards that can provide counselling and advice about treatment.

Legal vs. Ethical Liability: A Crisis of Leadership and Culture - Mel Fugate - TEDxSMU

There may be different policies for handling research results and handling incidental findings in research even if the clinical significance clinical validity and clinical utility may be a common denominator for these policies. Recent recommendations regarding how incidental findings should be handled provides a good start for this policymaking. In a report from a symposium on the management of incidental findings, Wolf et al have provided a helpful analysis with some central recommendations. A model for management of these findings will then include collaboration with relevant clinical expertise from the start and preparation of a disclosure scheme depending on the expected net benefits for the individual participant.

With broad consent emerging as the generally preferred solution for biobank studies and simple instructions available for coding that will protect the privacy of donors there is a good climate for international collaboration that may make progress in biobank research for the benefit of future patients through prevention and treatment.

The ethical review boards will play a key role in balancing interests associated with different research protocols. Regarding incidental findings a helpful start has recently been provided. National Center for Biotechnology Information , U. Journal List Br J Cancer v. Br J Cancer. Published online Nov Author information Article notes Copyright and License information Disclaimer.

Revised Oct 9; Accepted Oct Copyright , Cancer Research UK. This article has been cited by other articles in PMC. Abstract Biobank research has been the focus of great interest of scholars and regulatory bodies who have addressed different ethical issues.


  1. Ethical issues in governing biobanks: global perspectives - Zurich Open Repository and Archive?
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  3. Ethical Issues in Governing Biobanks: Global Perspectives | JAMA | JAMA Network!
  4. Ethical aspects of human biobanks: a systematic review.
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Keywords: informed consent, privacy, incidental findings, public trust, ethics, biobanks. Does biobank research imply new ethical challenges? In what sense is public trust at stake? Moving towards broad consent to biobank sampling The selection of appropriate information and consent procedures in association with biobank research has been one of the most contested issues. Return of information and benefit sharing As observed by Cambon-Thomsen , the individual participant in a biobank study will typically not benefit by participating.

Conclusion With broad consent emerging as the generally preferred solution for biobank studies and simple instructions available for coding that will protect the privacy of donors there is a good climate for international collaboration that may make progress in biobank research for the benefit of future patients through prevention and treatment. Coding and consent: moral challenges of the database project in Iceland. A biobank management model applicable to biomedical research. BMC Med Ethics. The social and ethical issues of post-genomic human biobanks.

Ethical aspects of human biobanks: a systematic review

Nat Rev Genet. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J. The ethical challenges of genetic databases: safeguarding altruism and trust. Kings Law J. Biobanks and blanket consent: The proper place of the public good and public perception rationales.

Ethical Issues in Governing Biobanks | Global Perspectives | Taylor & Francis Group

DNA databanks and consent: a suggested policy option involving an authorization model. Consent and anonymization in research involving biobanks. EMBO R. Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet.

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Governing genetic databases: collection, storage and use. The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu Rev Genomics Hum Genet. Ethical, legal, and social implications of biobanks for genetic research. Adv Genet. Balancing the quality of consent. J Med Ethics. Building on relationships of trust in biobank research.

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