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

Ciara Staunton, Jantina de Vries
Author Information
  1. Ciara Staunton: School of Law, Middlesex University, London.
  2. Jantina de Vries: Department of Medicine, University of Cape Town, Cape Town, South Africa.

Abstract

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.

Keywords

Grants

  1. /Wellcome Trust
  2. U01 HG008226/NHGRI NIH HHS
  3. U54 HG009790/NHGRI NIH HHS

Word Cloud

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