HSRC IR Repository

Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

Show simple item record

dc.date.accessioned 2019-08-19T12:17:21Z
dc.date.available 2019-08-19T12:17:21Z
dc.date.issued 2019-07-02 en
dc.identifier.uri http://hdl.handle.net/20.500.11910/14144
dc.description.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. en
dc.format.medium Print en
dc.subject RESEARCH DATA MANAGEMENT en
dc.subject AFRICA en
dc.subject RESEARCH DATA en
dc.subject BIOBANKS en
dc.subject GENETICS en
dc.subject DATA SHARING en
dc.title Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report en
dc.type Journal Article en
dc.description.version Y en
dc.ProjectNumber N/A en
dc.Volume 2 en
dc.BudgetYear 2019/20 en
dc.ResearchGroup Research Use and Impact Assessment en
dc.SourceTitle AAS Open Research en
dc.ArchiveNumber 10922 en
dc.PageNumber Online en
dc.outputnumber 10016 en
dc.bibliographictitle Staunton, C., Adams, R., Dove, E.S., Harriman, N., Horn, L., Labuschaigne, M., Mulder, N., Olckers, A., Pope, A., Ramsay, M., Swanepoel, C., Loideain, N.N. & de Vries, J. (2019) Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report. <i>AAS Open Research</i>. 2:Online. en
dc.publicationyear 2019 en
dc.contributor.author1 Staunton, C. en
dc.contributor.author2 Adams, R. en
dc.contributor.author3 Dove, E.S. en
dc.contributor.author4 Harriman, N. en
dc.contributor.author5 Horn, L. en
dc.contributor.author6 Labuschaigne, M. en
dc.contributor.author7 Mulder, N. en
dc.contributor.author8 Olckers, A. en
dc.contributor.author9 Pope, A. en
dc.contributor.author10 Ramsay, M. en
dc.contributor.author11 Swanepoel, C. en
dc.contributor.author12 Loideain, N.N. en
dc.contributor.author13 de Vries, J. en


Files in this item

Files Size Format View

There are no files associated with this item.

This item appears in the following Collection(s)

Show simple item record

Search HSRC IR


Browse

My Account