Managing access to biobanks: How can we reconcile individual privacy and public interests in genetic research?

Graeme Laurie, Pierre Mallia, David A. Frenkel, Atina Krajewska, Helena Moniz, Salvor Nordal, Claudia Pitz, Judit Sandor

Research output: Contribution to journalReview articlepeer-review

23 Scopus citations

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.

Original languageEnglish
Pages (from-to)315-337
Number of pages23
JournalMedical Law International
Volume10
Issue number4
DOIs
StatePublished - 1 Jan 2010

ASJC Scopus subject areas

  • Law

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