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

Author

Staunton, Ciara, Adams, Rachel, Dove, Edward S, Harrriman, Natalie, Horn, Lyn, Labuschaigne, Melodie, Mulder, Nicola, Olckers, Antonel, Pope, Anne, Ramsay, Michele, Swanepoel, Carmen, Ni Loideain, Nora, and deVries, Jantina

Subjects
education
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.

Published
2019

10. Blockchain versus data protection

Author

Kuner, Christopher, primary, Cate, Fred, additional, Lynskey, Orla, additional, Millard, Christopher, additional, Ni Loideain, Nora, additional, and Svantesson, Dan, additional

Published
2018
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13. The GDPR as a chance to break down borders

Author

Kuner, Christopher, primary, Jerker, Dan, additional, Svantesson, B, additional, Cate, Fred H, additional, Lynskey, Orla, additional, Millard, Christopher, additional, and Ni Loideain, Nora, additional

Published
2017
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16. EU Law and Mass Internet Metadata Surveillance in the Post-Snowden Era

Author

Ni Loideain, Nora and Ni Loideain, Nora

Abstract

Legal frameworks exist within democracies to prevent the misuse and abuse of personal data that law enforcement authorities obtain from private communication service providers. The fundamental rights to respect for private life and the protection of personal data underpin this framework within the European Union. Accordingly, the protection of the principles and safeguards required by these rights is key to ensuring that the oversight of State surveillance powers is robust and transparent. Furthermore, without the robust scrutiny of independent judicial review, the principles and safeguards guaranteed by these rights may become more illusory than real. Following the Edward Snowden revelations, major concerns have been raised worldwide regarding the legality, necessity and proportionality standards governing these laws. In 2014, the highest court in the EU struck down the legal framework that imposed a mandatory duty on communication service providers to undertake the mass retention of metadata for secret intelligence and law enforcement authorities across the EU. This article considers the influence of the Snowden revelations on this landmark judgment. Subsequently, the analysis explores the significance of this ruling for the future reform of EU law governing metadata surveillance and its contribution to the worldwide debate on indiscriminate and covert monitoring in the post-Snowden era.

Published
2015

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

Author

Staunton C, Adams R, Dove ES, Harriman N, Horn L, Labuschaigne M, Mulder N, Olckers A, Pope A, Ramsay M, Swanepoel C, Ni Loideain N, and De Vries J

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., Competing Interests: No competing interests were disclosed.

Published
2019
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