The evolving role of research ethics committees in the era of open data

被引:2
|
作者
Mahomed, S. [1 ,2 ]
Labuschaigne, M. [1 ]
机构
[1] Unisa, Dept Jurisprudence, Pretoria, South Africa
[2] Univ Witwatersrand, Steve Biko Ctr Bioeth, Johannesburg, South Africa
关键词
GENOMIC RESEARCH; SOUTH-AFRICA; PRIVACY; PROTECTION;
D O I
10.7196/SAJBL.2022.v15i3.822
中图分类号
R-052 [医学伦理学];
学科分类号
0101 ; 120402 ;
摘要
While open science gains prominence in South Africa with the encouragement of open data sharing for research purposes, there are stricter laws and regulations around privacy - and specifically the use, management and transfer of personal information - to consider. The Protection of Personal Information Act No. 4 of 2013 (POPIA), which came into effect in 2021, established stringent requirements for the processing of personal information and has changed the regulatory landscape for the transfer of personal information across South African borders. At the same time, draft national policies on open science encourage wide accessibility to data and open data sharing in line with international best practice. As a result, the operation of research ethics committees (RECs) in South Africa is affected by the conflicting demands of the shift towards open science on the one hand, and the stricter laws protecting participants' personal information and the transfer thereof, on the other. This article explores the continuing evolving role of RECs in the era of open data and recommends the development of a data transfer agreement (DTA) for the ethical management of personal health information, considering the challenges that RECs encounter, which centres predominantly on privacy, data sharing and access concerns following advances in genetic and genomic research and biobanking. S Afr J Bioethics Law 2022;15(3):80-83. https://doi.org/10.7196/SAJBL.2022.v15i3.822
引用
收藏
页码:80 / 83
页数:4
相关论文
共 50 条
  • [21] Research ethics committees in a tight spot: Approving consent strategies for child research that are prima facie illegal but are ethical in terms of national guidelines
    Strode, A. E.
    Singh, P. P.
    Slack, C. M.
    Wassenaar, D. R.
    SAMJ SOUTH AFRICAN MEDICAL JOURNAL, 2018, 108 (10): : 828 - 832
  • [22] Rethinking Confidentiality in Qualitative Research in the Era of Big Data
    Kamanzi, Adalbertus
    Romania, Megan
    AMERICAN BEHAVIORAL SCIENTIST, 2019, 63 (06) : 743 - 758
  • [23] Open Access Data Sharing in Genomic Research
    Pereira, Stacey
    Gibbs, Richard A.
    McGuire, Amy L.
    GENES, 2014, 5 (03): : 739 - 747
  • [24] Telco Big Data Research and Open Problems
    Costa, Constantinos
    Zeinalipour-Yazti, Demetrios
    2019 IEEE 35TH INTERNATIONAL CONFERENCE ON DATA ENGINEERING (ICDE 2019), 2019, : 2056 - 2059
  • [25] Reframing data ethics in research methods education: a pathway to critical data literacy
    Atenas, Javiera
    Havemann, Leo
    Timmermann, Cristian
    INTERNATIONAL JOURNAL OF EDUCATIONAL TECHNOLOGY IN HIGHER EDUCATION, 2023, 20 (01)
  • [26] CONTEXTUAL CHALLENGES IN SOUTH AFRICA: THE ROLE OF A RESEARCH ETHICS COMMITTEE
    Louw, Brenda
    Delport, Rina
    JOURNAL OF ACADEMIC ETHICS, 2006, 4 (1-4) : 39 - 60
  • [27] Raising Awareness of Research Ethics in SoTL: The Role of Educational Developers
    Stockley, Denise
    Balkwill, Laura-Lee
    CANADIAN JOURNAL FOR THE SCHOLARSHIP OF TEACHING AND LEARNING, 2013, 4 (01):
  • [28] Web Research Ethics Confidentiality, Consent, Data Integrity & More
    Kinder-Kurlanda, Katharina
    Zimmer, Michael
    COMPANION OF THE 11TH ACM CONFERENCE ON WEB SCIENCE (WEBSCI' 19), 2019, : 21 - 22
  • [29] Research on Information Security and Privacy of Libraries in Big Data Era
    Sun, Ningning
    Ma, Lihua
    MODERN TECHNOLOGIES IN MATERIALS, MECHANICS AND INTELLIGENT SYSTEMS, 2014, 1049 : 1934 - 1937
  • [30] Ethics in educational technology research: Informing participants on data sharing risks
    Beardsley, Marc
    Santos, Patricia
    Hernandez-Leo, Davinia
    Michos, Konstantinos
    BRITISH JOURNAL OF EDUCATIONAL TECHNOLOGY, 2019, 50 (03) : 1019 - 1034