TACKLING LEGAL CHALLENGES POSED BY POPULATION BIOBANKS: RECONCEPTUALISING CONSENT REQUIREMENTS

被引:15
|
作者
Otlowski, Margaret F. A. [1 ]
机构
[1] Univ Tasmania, Hobart, Tas 7001, Australia
关键词
biobanks; consent; governance; research; trust; INFORMED-CONSENT; GENETIC RESEARCH; PUBLIC PERSPECTIVES; ETHICAL-ISSUES; DATABASES; DONATION; SAMPLES; GENOMICS; DONORS; IMPACT;
D O I
10.1093/medlaw/fwr035
中图分类号
D9 [法律]; DF [法律];
学科分类号
0301 ;
摘要
This paper examines, from an Australian and international perspective, the phenomenon of population obiobanks' (research platforms comprising collections of human genetic samples or obiospecimens' and relevant personal information) and the legal challenges that this development presents. In particular, the paper focuses on the legal concept of consent and the tensions on the traditional understanding of consent that large-scale, long-term population biobanks exert. The aim of the paper is to review the operation of consent principles as they apply to population biobanks and to propose a way forward for how the consent concept can be reconceptualised to meet their demands. In particular, the paper argues for a more liberal approach which allows for obroad' (or oenlarged' or oopen') consent in circumstances where permission is sought for future use of samples in, as yet unspecified, genetic research. In pursuing this aim, the objectives underlying this paper are to ensure that unnecessary impediments to research are removed and, at the same time, to facilitate research participation and respect for autonomous choices by research subjects.
引用
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页码:191 / 226
页数:36
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