The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information.
Internationally networked umbilical cord blood banks hold great promise for better clinical outcomes, but also raise a host of potential ethical and legal concerns. There is now significant accumulated experience in Australia and overseas with regard to the establishment of human genetic research da...
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ftmacquarieunicr:oai:https://researchers.mq.edu.au:publications/d18d6b3b-5b16-4219-8163-e4b5a461073e 2024-05-19T07:44:18+00:00 The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. Weisbrot, David 2012-03 https://researchers.mq.edu.au/en/publications/d18d6b3b-5b16-4219-8163-e4b5a461073e http://www.scopus.com/inward/record.url?scp=84861673609&partnerID=8YFLogxK eng eng info:eu-repo/semantics/closedAccess Weisbrot , D 2012 , ' The ethical, legal and social implications of umbilical cord blood banking : learning important lessons from the protection of human genetic information. ' , Journal of Law and Medicine , vol. 19 , no. 3 , pp. 525-549 . article 2012 ftmacquarieunicr 2024-04-30T02:51:22Z Internationally networked umbilical cord blood banks hold great promise for better clinical outcomes, but also raise a host of potential ethical and legal concerns. There is now significant accumulated experience in Australia and overseas with regard to the establishment of human genetic research databases and tissue collections, popularly known as "biobanks". For example, clear lessons emerge from the controversies that surrounded, stalled or derailed the establishment of some early biobanks, such as Iceland's deCODE, Autogen's Tonga database, a proposed biobank in Newfoundland, Canada, and the proposed Taiwan biobank. More recent efforts in the United Kingdom, Japan, Quebec and Tasmania have been relatively more successful in generating public support, recognising the critical need for openness and transparency, and ample public education and debate, in order to build community acceptance and legitimacy. Strong attention must be paid to ensuring that other concerns--about privacy, discrimination, informed consent, governance, security, commercial fairness and financial probity--are addressed in structural terms and monitored thereafter, in order to maintain public confidence and avoid a backlash that inevitably would imperil such research. Once lost, credibility is very difficult to restore. Article in Journal/Newspaper Newfoundland Macquarie University Research Portal |
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Macquarie University Research Portal |
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ftmacquarieunicr |
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English |
description |
Internationally networked umbilical cord blood banks hold great promise for better clinical outcomes, but also raise a host of potential ethical and legal concerns. There is now significant accumulated experience in Australia and overseas with regard to the establishment of human genetic research databases and tissue collections, popularly known as "biobanks". For example, clear lessons emerge from the controversies that surrounded, stalled or derailed the establishment of some early biobanks, such as Iceland's deCODE, Autogen's Tonga database, a proposed biobank in Newfoundland, Canada, and the proposed Taiwan biobank. More recent efforts in the United Kingdom, Japan, Quebec and Tasmania have been relatively more successful in generating public support, recognising the critical need for openness and transparency, and ample public education and debate, in order to build community acceptance and legitimacy. Strong attention must be paid to ensuring that other concerns--about privacy, discrimination, informed consent, governance, security, commercial fairness and financial probity--are addressed in structural terms and monitored thereafter, in order to maintain public confidence and avoid a backlash that inevitably would imperil such research. Once lost, credibility is very difficult to restore. |
format |
Article in Journal/Newspaper |
author |
Weisbrot, David |
spellingShingle |
Weisbrot, David The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
author_facet |
Weisbrot, David |
author_sort |
Weisbrot, David |
title |
The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
title_short |
The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
title_full |
The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
title_fullStr |
The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
title_full_unstemmed |
The ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
title_sort |
ethical, legal and social implications of umbilical cord blood banking:learning important lessons from the protection of human genetic information. |
publishDate |
2012 |
url |
https://researchers.mq.edu.au/en/publications/d18d6b3b-5b16-4219-8163-e4b5a461073e http://www.scopus.com/inward/record.url?scp=84861673609&partnerID=8YFLogxK |
genre |
Newfoundland |
genre_facet |
Newfoundland |
op_source |
Weisbrot , D 2012 , ' The ethical, legal and social implications of umbilical cord blood banking : learning important lessons from the protection of human genetic information. ' , Journal of Law and Medicine , vol. 19 , no. 3 , pp. 525-549 . |
op_rights |
info:eu-repo/semantics/closedAccess |
_version_ |
1799484066321399808 |