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Browsing by Author "de Vries, Jantina"

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African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study

Author: Munung, Nchangwi Syntia Date: 2016 Introduction: Genomics research raises a number of ethical, legal and social issues (ELSI), one of which is the concept of benefit sharing. While benefits and benefit sharing are difficult to discuss because of questions on what needs to be ... Read more
Community engagement strategies for genomic studies in Africa: a review of the literature

Author: Tindana, Paulina ; de Vries, Jantina ; Campbell, Megan ; Littler, Katherine ; Seeley, Janet ; Marshall, Patricia ; Troyer, Jennifer ; Ogundipe, Morisola ; Alibu, Vincent P ; Yakubu, Aminu ; Parker, Michael Date: 12 Apr 2015 Background: Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted ... Read more c b
Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?

Author: Ralefala, Dimpho ; Kasule, Mary ; Wonkam, Ambroise ; Matshaba, Mogomotsi ; de Vries, Jantina Date: 04 Nov 2020 Abstract Background A key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are ... Read more
Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model

Author: Tindana, Paulina ; Yakubu, Aminu ; Staunton, Ciara ; Matimba, Alice ; Littler, Katherine ; Madden, Ebony ; Munung, Nchangwi S ; de Vries, Jantina Date: 18 Oct 2019 Abstract In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the ... Read more
Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa

Author: Heathfield, Laura J ; Maistry, Sairita ; Martin, Lorna J ; Ramesar, Raj ; de Vries, Jantina Date: 29 Nov 2017 Background: The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research ... Read more
“I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa

Author: Masiye, Francis ; Mayosi, Bongani ; de Vries, Jantina Date: 15 Feb 2017 Background: Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining ... Read more
"It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use

Author: van Schalkwyk, Gerrit ; de Vries, Jantina ; Moodley, Keymanthri Date: 2012 BACKGROUND: The banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and ... Read more c b
Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town

Author: Van Niekerk, Katryn Date: 2015 Sickle Cell Disease (SCD) is an autosomal recessively inherited blood disorder that leads to a debilitating systemic illness. Although the disease was initially found predominantly in tropical and subtropical regions, SCD has now become a ... Read more
Mapping experiences and perspectives of equity in international health collaborations: a scoping review

Author: Faure, Marlyn C ; Munung, Nchangwi S ; Ntusi, Ntobeko A B ; Pratt, Bridget ; de Vries, Jantina Date: 09 Jan 2021 Background Whilst global health research often involves international collaborations, achieving or promoting equity within collaborations remains a key challenge, despite established conceptual approaches and the development ... Read more c b
A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research

Author: de Vries, Jantina ; Abayomi, Akin ; Brandful, James ; Littler, Katherine ; Madden, Ebony ; Marshall, Patricia ; Ouwe Missi Oukem-Boyer, Odile ; Seeley, Janet Date: 07 Aug 2014 Background: The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, ... Read more c b
Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study

Author: Campbell, Megan M ; de Vries, Jantina ; Mqulwana, Sibonile G ; Mndini, Michael M ; Ntola, Odwa A ; Jonker, Deborah ; Malan, Megan ; Pretorius, Adele ; Zingela, Zukiswa ; Van Wyk, Stephanus ; Stein, Dan J ; Susser, Ezra Date: 11 Jul 2018 Background Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African ... Read more
Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries

Author: de Vries, Jantina ; Munung, Syntia N ; Matimba, Alice ; McCurdy, Sheryl ; Ouwe Missi Oukem-Boyer, Odile ; Staunton, Ciara ; Yakubu, Aminu ; Tindana, Paulina ; H3Africa Consortium Date: 02 Feb 2017 Background: The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges ... Read more c b
Return of a Fragile X Syndrome Genetic Result: Exploring the feedback of Individual genetic findings and their relation to traditional knowledge in a village in Cameroon

Author: Karen, Kengne Kamga Date: 2021 Introduction: Fragile X Syndrome (FXS) is the most common genetic cause of intellectual disability (ID) and Autism Spectrum Disorder (ASD). It is caused by the expansion of CGG (Cytosine, Guanine, Guanine) repeats at the 5' untranslated region ... Read more
Stigma and African genomics research: An exploration of stigma associated with the genetic attribution of rheumatic heart disease

Author: Faure, Marlyn Collin Date: 2018 There is mixed evidence about how genetic attribution of disease may impact on stigma. One theory, based on essentialism, argues that knowledge of genetic attribution may increase stigma, while attribution theory argues that bio-genetic ... Read more

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Browsing by Author "de Vries, Jantina"

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