Jantina De Vries
Dados Biográficos
| ID | 3582660 |
|---|---|
| NOME | Jantina De Vries |
| PRENOMES | Jantina |
| SOBRENOME | De Vries |
| ASSINATURA | DE VRIES J |
| AFILIAÇÕES | University of Cape Town |
| ORCID | 0000-0001-7192-2633 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 20 |
| TOTAL DE CITAÇÕES | 13 |
| TOTAL COMO AUTOR | 20 |
| TOTAL COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 2012 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 3 |
Demanding solidarity, not salvation
There is increasing attention paid to solidarity in global health, but its substance and definitions remain contested. We explore the tensions between global health institutions’ historic approaches to sex work, their commitment to health and human rights and how these are connected to or disconnected from solidarity. We foreground the protracted and incomplete evolution from international health approaches to sex workers as spreaders of pathogen…
Rethinking ethical reflexivity and oversight in health research through an ecosystem approach
As the scope of morally relevant considerations widens and new challenges emerge at the frontiers of health innovation, there are questions about the appropriate role and remit for research ethics review, within the broader context of the whole health research ecosystem. Drawing on discussion at a satellite meeting at the 2022 Global Forum on Bioethics in Research in Cape Town, we argue that the ethical conduct of research is the responsibility o…
Health Research Ethics in Southern Africa
The health research landscape in southern Africa is becoming increasingly complex as research efforts intensify to address the region's significant disease burden. The increasing volume and complexity of health research in low- and middle-income countries (LMICs) highlights the ongoing need for enhanced research ethics capacity. To supplement a review published in 2014, this paper provides an overview of research ethics capacity-building initiati…
Lessons learned from the translation of the Internalised Stigma of Mental Illness (Ismi) scale into isiXhosa for use with South African Xhosa people with schizophrenia
Internalised stigma is highly prevalent among people with mental illness. This is concerning because internalised stigma is often associated with negative consequences affecting individuals' personal, familial, social, and overall wellbeing, employment opportunities and recovery. Currently, there is no psychometrically validated instrument to measure internalised stigma among Xhosa people in their home language. Our study aimed to translate the I…
Should institutions fund the feedback of individual findings in genomic research
The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service …
Epistemic justice in bioethics
Where is knowledge from the global South? An account of epistemic justice for a global bioethics
The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offer…
Addressing exploitation and inequities in open science
There are concerns that participation in open science will lead to various forms of exploitation – of researchers and scholars in low‐income countries and under‐resourced institutions. This article defends a contrary thesis and demonstrates the exact ways the underexplored notions of communal relationships, human dignity and social justice – and the normative principles to which they give rise – grounded in African philosophy can usefully address…
Covid-19 vaccine trials with children
As healthcare authorities around the world strive to get as many citizens as possible vaccinated against the SAR-CoV-2 virus, many countries have begun including children in the population groups to be vaccinated. Properly designed clinical trials involving children are important to ensure safety, efficacy, and dosage of therapies in (developing) children. Within the complex health, social, and political scenario of the ongoing pandemic, ethics c…
Guideline for feedback of individual genetic research findings for genomics research in Africa
As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline fo…
Towards equitable genomics governance in Africa
The post‐genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacit…
Cultural diversity is crucial for African neuroethics
Systematic Review of the Economic Evaluation of Returning Incidental Findings in Genomic Research
Objectives: Discussions regarding who and how incidental findings (IFs) should be returned and the ethics behind returning IFs have increased dramatically over the years. However, information on the cost and benefits of returning IFs to patients remains scanty. Design: This study systematically reviews the economic evaluation of returning IFs in genomic sequencing. We searched for published articles on the cost-effectiveness, cost-benefit, and co…
Genomics governance
Participants’ Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study
The feedback of individual results of genomics research is an ethical issue. However, which genetic results African participants would like to receive and why, remains unclear. A qualitative study was conducted to collect data from 44 adolescents and 49 parents/caregivers of adolescents enrolled in a genomic study in Botswana. Almost all the participants wanted to receive genetic results. Parents and caregivers wanted to receive results across al…
The role of causal knowledge in stigma considerations in African genomics research
How Should Biobanking Be Governed in Low-Resource Settings
Development of biobanks in Africa raises ethical questions related to particular features of African cancer research contexts, such as underresourced health care and research infrastructures and low-average research literacy. This article describes ethical challenges of informed consent, benefit sharing, and stigmatization and proposes navigating these challenges by developing a comprehensive governance framework to ensure African leadership in b…
Stigma in African genomics research
A recurring concern in genomics research is the possibility that it could lead to stigma for participants, their families and the population groups they belong to. Little evidence exists to explain how and when this ought to be a concern in genomics research in Africa whilst there is growing international evidence drawing into question the direct link between stigma and genetics. In this paper, we interrogate practical instances from African geno…
Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa
Investigating the potential for ethnic group harm in collaborative genomics research in Africa
Investigating the potential for ethnic group harm in collaborative genomics research in Africa
Stigma in African genomics research
A recurring concern in genomics research is the possibility that it could lead to stigma for participants, their families and the population groups they belong to. Little evidence exists to explain how and when this ought to be a concern in genomics research in Africa whilst there is growing international evidence drawing into question the direct link between stigma and genetics. In this paper, we interrogate practical instances from African geno…
Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa
Cultural diversity is crucial for African neuroethics
The role of causal knowledge in stigma considerations in African genomics research
Investigating the potential for ethnic group harm in collaborative genomics research in Africa
Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa
How Should Biobanking Be Governed in Low-Resource Settings
Development of biobanks in Africa raises ethical questions related to particular features of African cancer research contexts, such as underresourced health care and research infrastructures and low-average research literacy. This article describes ethical challenges of informed consent, benefit sharing, and stigmatization and proposes navigating these challenges by developing a comprehensive governance framework to ensure African leadership in b…
Stigma in African genomics research
A recurring concern in genomics research is the possibility that it could lead to stigma for participants, their families and the population groups they belong to. Little evidence exists to explain how and when this ought to be a concern in genomics research in Africa whilst there is growing international evidence drawing into question the direct link between stigma and genetics. In this paper, we interrogate practical instances from African geno…
Systematic Review of the Economic Evaluation of Returning Incidental Findings in Genomic Research
Objectives: Discussions regarding who and how incidental findings (IFs) should be returned and the ethics behind returning IFs have increased dramatically over the years. However, information on the cost and benefits of returning IFs to patients remains scanty. Design: This study systematically reviews the economic evaluation of returning IFs in genomic sequencing. We searched for published articles on the cost-effectiveness, cost-benefit, and co…
Genomics governance
Participants’ Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study
The feedback of individual results of genomics research is an ethical issue. However, which genetic results African participants would like to receive and why, remains unclear. A qualitative study was conducted to collect data from 44 adolescents and 49 parents/caregivers of adolescents enrolled in a genomic study in Botswana. Almost all the participants wanted to receive genetic results. Parents and caregivers wanted to receive results across al…
The role of causal knowledge in stigma considerations in African genomics research
Covid-19 vaccine trials with children
As healthcare authorities around the world strive to get as many citizens as possible vaccinated against the SAR-CoV-2 virus, many countries have begun including children in the population groups to be vaccinated. Properly designed clinical trials involving children are important to ensure safety, efficacy, and dosage of therapies in (developing) children. Within the complex health, social, and political scenario of the ongoing pandemic, ethics c…
Guideline for feedback of individual genetic research findings for genomics research in Africa
As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline fo…
Towards equitable genomics governance in Africa
The post‐genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacit…
Cultural diversity is crucial for African neuroethics
Epistemic justice in bioethics
Where is knowledge from the global South? An account of epistemic justice for a global bioethics
The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offer…
Addressing exploitation and inequities in open science
There are concerns that participation in open science will lead to various forms of exploitation – of researchers and scholars in low‐income countries and under‐resourced institutions. This article defends a contrary thesis and demonstrates the exact ways the underexplored notions of communal relationships, human dignity and social justice – and the normative principles to which they give rise – grounded in African philosophy can usefully address…
Should institutions fund the feedback of individual findings in genomic research
The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service …
Health Research Ethics in Southern Africa
The health research landscape in southern Africa is becoming increasingly complex as research efforts intensify to address the region's significant disease burden. The increasing volume and complexity of health research in low- and middle-income countries (LMICs) highlights the ongoing need for enhanced research ethics capacity. To supplement a review published in 2014, this paper provides an overview of research ethics capacity-building initiati…
Lessons learned from the translation of the Internalised Stigma of Mental Illness (Ismi) scale into isiXhosa for use with South African Xhosa people with schizophrenia
Internalised stigma is highly prevalent among people with mental illness. This is concerning because internalised stigma is often associated with negative consequences affecting individuals' personal, familial, social, and overall wellbeing, employment opportunities and recovery. Currently, there is no psychometrically validated instrument to measure internalised stigma among Xhosa people in their home language. Our study aimed to translate the I…
Demanding solidarity, not salvation
There is increasing attention paid to solidarity in global health, but its substance and definitions remain contested. We explore the tensions between global health institutions’ historic approaches to sex work, their commitment to health and human rights and how these are connected to or disconnected from solidarity. We foreground the protracted and incomplete evolution from international health approaches to sex workers as spreaders of pathogen…
Rethinking ethical reflexivity and oversight in health research through an ecosystem approach
As the scope of morally relevant considerations widens and new challenges emerge at the frontiers of health innovation, there are questions about the appropriate role and remit for research ethics review, within the broader context of the whole health research ecosystem. Drawing on discussion at a satellite meeting at the 2022 Global Forum on Bioethics in Research in Cape Town, we argue that the ethical conduct of research is the responsibility o…
Political science (12 obras) · Sociology (11 obras) · Ethics in Clinical Research (10 obras) · Engineering ethics (8 obras) · Medicine (8 obras) · Biology (7 obras) · Law (7 obras) · Psychology (7 obras) · Bioethics (6 obras) · Public relations (6 obras)