Please use this identifier to cite or link to this item:
https://www.um.edu.mt/library/oar/handle/123456789/124803
Title: | Managing access to biobanks : how can we reconcile individual privacy and public interests in genetic research? |
Authors: | Laurie, Graeme Mallia, Pierre Frenkel, David A. Krajewska, Atina Moniz, Helena Nordal, Salvor Pitz, Claudia Sandor, Judit |
Keywords: | Biobanks -- Management Genetics -- Research Biobanks -- Moral and ethical aspects Informed Consent (Medical Law) Privacy, Right of |
Issue Date: | 2010 |
Publisher: | Sage |
Citation: | Laurie, G., Mallia, P., Frenkel, D. A., Krajewska, A., Moniz, H., Nordal, S.,...Sandor, J. (2010). Managing access to biobanks: How can we reconcile individual privacy and public interests in genetic research? Medical Law International, 10(4), 315-337. |
Abstract: | This article is concerned with the ultimate objectives of genetic biobanks set up to promote the public interest-being the sharing of samples and data for medical research-and the consequences for personal privacy of realising them. Our aim is to chart the values, interests and principles in play, to consider the challenges of realising biobanking objectives on a global scale, and to propose viable ways forward that ensure, as far as possible, that access provisions remain fit for purpose throughout the entire life of a biobank, while adequately protecting the privacy interests at stake. It is argued that key features in any robust access model must include mechanisms to (a) maintain participant trust in management of the resource and to measure and respond to participants' expectations, (b) facilitate and promote the sharing of benefits, and (c) respond timeously and effectively to new challenges. |
URI: | https://www.um.edu.mt/library/oar/handle/123456789/124803 |
Appears in Collections: | Scholarly Works - FacM&SFM |
Files in This Item:
File | Description | Size | Format | |
---|---|---|---|---|
Managing access to biobanks how can we reconcile individual privacy and public interests in genetic research 2010.pdf Restricted Access | 2.84 MB | Adobe PDF | View/Open Request a copy |
Items in OAR@UM are protected by copyright, with all rights reserved, unless otherwise indicated.