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  • Rachel Adams
Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa
Unrestricted Use
CC BY
Rating

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.

Subject:
Health, Medicine and Nursing
Material Type:
Reading
Author:
Anne Pope
Antonel Olckers
Carmen Swanepoel
Ciara Staunton
Edward S. Dove
Jantina De Vries
Lyn Horn
Melodie Labuschaigne
Michele Ramsay
Natalie Harriman
Nicola Mulder
Nora Ni Loideain
Rachel Adams
Date Added:
06/23/2020
Open at the Margins: Critical Perspectives on Open Education
Conditional Remix & Share Permitted
CC BY-SA
Rating

This book represents a starting point towards curating and centering marginal voices and non-dominant epistemic stances in open education. It includes the work of 43 diverse authors whose perspectives challenge the dominant hegemony.

Subject:
Education
Material Type:
Textbook
Author:
Adele Vrana
Amy Collier
and Audrey Watters
Autumm Caines
Billy Meinke-Lau
Bonnie Stewart
Caroline Kuhn H.
Catherine Cronin
Cheryl Hodgkinson-Williams
Chris Bourg
Chris Gilliard
Christian Friedrich
Christina Hendricks
Jaime Marsh
Javiera Atenas
Jesse Stommel
Jess Mitchell
Jim Luke
Judith Pete
Karen Cangialosi
Laura Czerniewicz
Lorna M. Campbell
Maha Bali
Matthew Moore
Naomi Barnes
Nicole Allen
Paul Prinsloo
Rachel Jurinich Mattson
Rajiv Jhangiani
Robin DeRosa
Samantha Streamer Veneruso
Sarah Hare
sava saheli singh
Sherri Spelic
Siko Bouterse
Simon Ensor
Sukaina Walji
Suzan Koseoglu
Tannis Morgan
Tara Robertson
Taskeen Adam
Tel Amiel
Tutaleni Asino
Date Added:
08/17/2020