The governance of genomic biobank research in Africa: reframing the regulatory tilt

被引:12
作者
Staunton, Ciara [1 ,2 ]
de Vries, Jantina [3 ]
机构
[1] Middlesex Univ, Sch Law, London, England
[2] Eurac Res, Inst Biomed, Bolzano, Italy
[3] Univ Cape Town, Dept Med, Cape Town, South Africa
关键词
regulation; ethics; genomics; biobank; Africa; reciprocity; DEVELOPING-COUNTRIES; BROAD CONSENT; TRUST; FUTURE; MODEL;
D O I
10.1093/jlb/lsz018
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
Genomic biobank research has experienced exponential growth in recent years. It represents a real opportunity to remedy global health inequity that has seen limited investment in diseases affecting populations from low- and middle-income countries. Previous research in Africa was limited to so-called parachute research, whereby samples were taken from local populations for use in high-income countries with no local oversight or use of the sample. These exploitative practices must be guarded against, but the current regulation of genomic research in Africa adopts a precautionary approach that at times is restrictive in nature. We argue that the regulation and oversight of genomic biobank research should guard against exploitative research, but in a manner that promotes reciprocal benefit and not restrictive research practices. To achieve this, there must be a rebalancing of the regulatory tilt.
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页数:20
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