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  • Nicola Mulder
Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa
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CC BY
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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
Four simple recommendations to encourage best practices in research software
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CC BY
Rating

Scientific research relies on computer software, yet software is not always developed following practices that ensure its quality and sustainability. This manuscript does not aim to propose new software development best practices, but rather to provide simple recommendations that encourage the adoption of existing best practices. Software development best practices promote better quality software, and better quality software improves the reproducibility and reusability of research. These recommendations are designed around Open Source values, and provide practical suggestions that contribute to making research software and its source code more discoverable, reusable and transparent. This manuscript is aimed at developers, but also at organisations, projects, journals and funders that can increase the quality and sustainability of research software by encouraging the adoption of these recommendations.

Subject:
Computer Science
Information Science
Material Type:
Reading
Provider:
F1000Research
Author:
Alejandra Gonzalez-Beltran
Allegra Via
Andrew Treloar
Bérénice Batut
Bernard Pope
Björn GrüningJonas Hagberg
Brane Leskošek
Carole Goble
Daniel S. Katz
Daniel Vaughan
David Mellor
Federico López Gómez
Ferran Sanz
Harry-Anton Talvik
Horst Pichler
Ilian Todorov
Jon Ison
Josep Ll. Gelpí
Leyla Garcia
Luis J. Oliveira
Maarten van Gompel
Madison Flannery
Manuel Corpas
Maria V. Schneider
Martin Cook
Mateusz Kuzak
Michelle Barker
Mikael Borg
Monther Alhamdoosh
Montserrat González Ferreiro
Nathan S. Watson-Haigh
Neil Chue Hong
Nicola Mulder
Petr Holub
Philippa C. Griffin
Radka Svobodová Vařeková
Radosław Suchecki
Rafael C. Jiménez
Robert Pergl
Rob Hooft
Rowland Mosbergen
Salvador Capella-Gutierrez
Simon Gladman
Sonika Tyagi
Steve Crouchc
Victoria Stodden
Xiaochuan Wang
Yasset Perez-Riverol
Date Added:
08/07/2020