Literature DB >> 31266570

Safeguarding the future of genomic research in South Africa: Broad consent and the Protection of Personal Information Act No. 4 of 2013.

C Staunton1, R Adams, M Botes, E S Dove, L Horn, M Labuschaigne, G Loots, S Mahomed, J Makuba, A Olckers, M S Pepper, A Pope, M Ramsay, N N Loideain, J De Vries.   

Abstract

Genomic research has been identified in South Africa (SA) as important in developing a strong bio-economy that has the potential to improve human health, drive job creation and offer potential solutions to the disease burden harboured by low- and middle-income countries. Central to the success of genomic research is the wide sharing of biological samples and data, but the true value of data can only be unlocked if there are laws and policies in place that foster the legal and ethical sharing of genomic data. The introduction and entry into force of SA's Protection of Personal Information Act (POPIA) No. 4 of 2013 is to be welcomed, but the wording of POPIA as it pertains to consent for the processing of personal information for research purposes has sparked a debate about the legal status of broad consent. We argue that a purposive interpretation of the legislation would permit broad consent for the processing of personal information for research. Although there are ongoing debates surrounding the ethical use of broad consent in Africa, the objective of this article is not to engage with the ethics of broad consent itself, but rather to focus on the legal status of broad consent for genomic data sharing under POPIA.

Entities:  

Year:  2019        PMID: 31266570     DOI: 10.7196/SAMJ.2019.v109i7.14148

Source DB:  PubMed          Journal:  S Afr Med J


  7 in total

Review 1.  Next Generation Sequencing and Bioinformatics Analysis of Family Genetic Inheritance.

Authors:  Aquillah M Kanzi; James Emmanuel San; Benjamin Chimukangara; Eduan Wilkinson; Maryam Fish; Veron Ramsuran; Tulio de Oliveira
Journal:  Front Genet       Date:  2020-10-23       Impact factor: 4.599

2.  South Africa's new standard material transfer agreement: proposals for improvement and pointers for implementation.

Authors:  Donrich W Thaldar; Marietjie Botes; Annelize Nienaber
Journal:  BMC Med Ethics       Date:  2020-09-03       Impact factor: 2.652

3.  Editorial - ethical practice and genomic research.

Authors:  Janet Seeley; Michael Parker
Journal:  Glob Bioeth       Date:  2020-12-09

4.  Digitized HIV/AIDS Treatment Adherence Interventions: A Review of Recent SMS/Texting Mobile Health Applications and Implications for Theory and Practice.

Authors:  Lunthita M Duthely; Alex P Sanchez-Covarrubias
Journal:  Front Commun (Lausanne)       Date:  2020-11-10

5.  Considerations for an integrated population health databank in Africa: lessons from global best practices.

Authors:  Jude O Igumbor; Edna N Bosire; Marta Vicente-Crespo; Ehimario U Igumbor; Uthman A Olalekan; Tobias F Chirwa; Sam M Kinyanjui; Catherine Kyobutungi; Sharon Fonn
Journal:  Wellcome Open Res       Date:  2021-08-23

6.  Data protection, data management, and data sharing: Stakeholder perspectives on the protection of personal health information in South Africa.

Authors:  Ciara Staunton; Kathrina Tschigg; Gayle Sherman
Journal:  PLoS One       Date:  2021-12-20       Impact factor: 3.240

7.  Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.

Authors:  Shenuka Singh; Keymanthri Moodley
Journal:  BMC Med Ethics       Date:  2021-07-01       Impact factor: 2.652

  7 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.