Dr Ciara Staunton
School of Law, Middlesex University (London)
Institute of Biomedicine, Eurac Research (Italy)
A proposal to reframe the regulatory tilt in genomic biobanking research in Africa
Genomic biobank research has experienced exponential growth in recent years and 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 (LMICs). Previous research in Africa was limited to so-called parachute research whereby samples were taken from local populations for use in high income countries (HICs) 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 restricts the research.
The regulation of genomic biobank research in Africa must guard against exploitative research, but it should do so in a manner that promotes reciprocal benefit and not restrictive research practices. To achieve this there must be a rebalancing of the regulatory tilt. In this paper I set out some key benchmarks for good governance of genomic biobank research that help rebalance the regulatory tilt in Africa.
Dr Ciara Staunton is a Senior Lecturer in Law at Middlesex University and a Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy). Her research focuses on the governance of new and emerging technologies, in particular stem cell research, genomic research and biobanking. Ciara’s current research focuses on the sharing of health data for research, with a particular focus on Africa and she is a consultant to the South African National Institute for Communicable Diseases on strengthening its data protection frameworks. She has been in receipt of grants from the Wellcome Trust, the National Institutes of Health (NIH) and the Irish Research Council and has been involved in the development of policy in Ireland, Bahrain and Africa.
From 2010-2013 she was a post-doctorate researcher at the Centre for Medical Ethics and Law, Stellenbosch University. During this time she co-ordinated the Advancing Research Ethics in Southern Africa (ARESA) Program and was a member of the H3Africa Ethics and Regulatory Issues Working Group. She obtained her PhD from NUI, Galway for her thesis The Regulation of Stem Cell Research in Ireland.
Prior to starting her academic career, she was a Legal Researcher at the Law Reform Commission of Ireland.