Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report
OUTPUT TYPE: Journal Article
PUBLICATION YEAR: 2019
TITLE AUTHOR(S): C.Staunton, R.Adams, E.S.Dove, N.Harriman, L.Horn, M.Labuschaigne, N.Mulder, A.Olckers, A.Pope, M.Ramsay, C.Swanepoel, N.N.Loideain, J.de Vries
KEYWORDS: AFRICA, BIOBANKS, DISSEMINATION OF INFORMATION, GENETICS, RESEARCH DATA, RESEARCH DATA MANAGEMENT
DEPARTMENT: Impact Centre (IC), Impact Centre (PRESS), Impact Centre (CC)
Print: HSRC Library: shelf number 10922
HANDLE: 20.500.11910/14144
URI: http://hdl.handle.net/20.500.11910/14144
If you would like to obtain a copy of this Research Output, please contact Hanlie Baudin at researchoutputs@hsrc.ac.za.
Abstract
Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA.-
Related Research Outputs:
- Africa in the age of biology
- It's all in the numbers: research data and outputs that make a difference
- Book review: Goetz, A.M., Hassim, S. (eds.) (2003). No shortcuts to power: African women in politics and policy making. Cape Town: Zed Books. 246 p. ISBN 1842771477
- Democracy in Africa: moving beyond a difficult legacy
- A walk in the garden of Eden: genetics trails into our African past
- Book review: Legum, C. (2001) Africa since independence. Bloomington, Indiana: Indiana University Press.105pp. & Abrahamsen, R. Disciplining democracy: development discourse and good governance in Africa. London: Zed Books. 168pp. & Salih, M. (2001) African democracies and African politics. London: Pluto Press. 234pp
- Fragments of democracy: nationalism, development and the state in Africa
- Educational research in the African development context: rediscovery, reconstruction and prospects
- Africa in the contemporary world
- Escaping Europe's clutches
- Managing African conflicts: the challenge of military intervention
- Globalization and emerging trends in African states' foreign policy-making process
- African sociology: towards a critical perspective: the collected essays of Bernard Makhosezwe Magubane
- With Africa for Africa: towards quality education for all
- Assessment of mathematics and science in Africa (AMASA)
- Report to the EFA regional technical advisory group, UNESCO sub-regional office for Southern Africa on EFA assessment
- Education and culture: report-back from session 2
- A comparative analysis of the financing of HIV/AIDS programmes in Botswana, Lesotho, Mozambique, South Africa, Swaziland and Zimbabwe, October 2003
- Between poverty and prosperity: the new development: agenda for Africa
- A note on political institutions and democracy in Africa