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Jantina de Vries [49]Jan De Vries [5]Jan Hendrik De Vries [1]Jan M. A. de Vries [1]
  1.  63
    Ethical issues in human genomics research in developing countries.Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker - 2011 - BMC Medical Ethics 12 (1):5.
    BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...)
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  2.  16
    Where is knowledge from the global South? An account of epistemic justice for a global bioethics.Bridget Pratt & Jantina de Vries - 2023 - Journal of Medical Ethics 49 (5):325-334.
    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 offers a comprehensive account of epistemic justice for global health ethics. We (...)
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  3.  67
    Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries.Jantina de Vries, Syntia Nchangwi Munung, Alice Matimba, Sheryl McCurdy, Odile Ouwe Missi Oukem-Boyer, Ciara Staunton, Aminu Yakubu & Paulina Tindana - 2017 - BMC Medical Ethics 18 (1):1-9.
    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 that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research (...)
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  4.  80
    Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.Nchangwi Syntia Munung, Patricia Marshall, Megan Campbell, Katherine Littler, Francis Masiye, Odile Ouwe-Missi-Oukem-Boyer, Janet Seeley, D. J. Stein, Paulina Tindana & Jantina de Vries - 2016 - Journal of Medical Ethics 42 (2):132-137.
    Background The rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium. Methods A qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of (...)
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  5.  18
    Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundA 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 to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus.MethodsIn this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study (...)
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  6.  34
    Community engagement in global health research that advances health equity.Bridget Pratt & Jantina de Vries - 2018 - Bioethics 32 (7):454-463.
    Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in (...)
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  7.  42
    What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba & Janet Seeley - 2020 - Global Bioethics 31 (1):169-183.
    ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...)
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  8.  38
    Informed consent in genomic research and biobanking: taking feedback of findings seriously.Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley & Michael Parker - 2020 - Global Bioethics 31 (1):200-215.
    Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. (...)
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  9.  36
    Informed consent in genomic research and biobanking: taking feedback of findings seriously.Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley & Michael Parker - 2020 - Global Bioethics 31 (1):200-215.
    ABSTRACT Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in (...)
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  10.  34
    What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.Janet Seeley, Oliver Mweemba, Paulina Tindana, Michael Parker, Jantina de Vries & Rwamahe Rutakumwa - 2020 - Global Bioethics 31 (1):169-183.
    ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...)
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  11.  64
    Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.Oliver Mweemba, John Musuku, Bongani M. Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana & Jantina De Vries - 2020 - Global Bioethics 31 (1):184-199.
    ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...)
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  12.  59
    Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study.Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar & Dan J. Stein - 2015 - BMC Medical Ethics 16 (1):1-9.
    BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...)
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  13.  40
    “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa.Francis Masiye, Bongani Mayosi & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):12.
    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 informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...)
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  14.  28
    Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.Nchangwi Syntia Munung, Jantina de Vries & Bridget Pratt - 2021 - Medicine, Health Care and Philosophy 24 (3):377-388.
    There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...)
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  15.  28
    "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use.Gerrit van Schalkwyk, Jantina de Vries & Keymanthri Moodley - 2012 - BMC Medical Ethics 13 (1):19-.
    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 exploringparticipant perspectives in North America and Europe, hardly any studies have been reportedin Africa. This is problematic in particular in light of the growing amount of research takingplace in Africa, and with the rise of biobanking practices also on the African continent. Inorder to investigate the perspectives of African research participants, we (...)
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  16.  61
    Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.Jantina De Vries, Paulina Tindana, Janet Seeley, Rwamahe Rutakumwa, Michael Parker, Bongani M. Mayosi, John Musuku & Oliver Mweemba - 2020 - Global Bioethics 31 (1):184-199.
    ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...)
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  17.  26
    What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba & Janet Seeley - 2019 - Global Bioethics:1-15.
    Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee (...)
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  18. Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa.Jantina de Vries & Michael Pepper - 2012 - Journal of Medical Ethics 38 (8):474-478.
    Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these (...)
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  19.  28
    Epistemic justice in bioethics: interculturality and the possibility of reparations.Jantina de Vries & Bridget Pratt - 2023 - Journal of Medical Ethics 49 (5):347-347.
    The topic of epistemic injustice in global health ethics is complex, important and vast. While presenting as nuanced and complete a picture of the challenge as we possibly could, we were acutely aware of our positionality and how it gave us a certain viewpoint that would need to be expanded by others with different positions and experiences. We were, therefore, delighted to receive the collected commentaries by Atuire,1 Abimbola,2 Frimpong-Mansoh,3 Nyamnjoh and Ewuoso,4 Tangwa,5 Ambrogi et al.6 We would like to (...)
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  20.  25
    Capturing Moral Distress as a Global Phenomenon in Healthcare.Heidi Matisonn, Jantina de Vries & Jackie Hoare - 2023 - American Journal of Bioethics 23 (4):82-84.
    Whilst Kolbe and de Melo-Martin (2023) appropriately identify a range of concerns about the validity of existing instruments to measure moral distress, one additional limitation that the authors di...
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  21.  31
    Ethical implications of the use of whole genome methods in medical research.Jane Kaye, Paula Boddington, Jantina de Vries, Naomi Hawkins & Karen Melham - unknown
    The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...)
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  22.  12
    Enhancing Reciprocity, Equity and Quality of Ethics Review for Multisite Research During Public Health Crises: The Experience of the COVID-19 Clinical Research Coalition Ethics Working Group.Vasiliki Rahimzadeh, Jennyfer Ambe & Jantina de Vries - 2023 - Journal of Law, Medicine and Ethics 51 (2):258-270.
    In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.
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  23.  34
    Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.Oliver Mweemba, John Musuku, Bongani M. Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana & Jantina De Vries - 2019 - Global Bioethics:1-16.
    The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants, study staff (...)
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  24.  31
    Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model.Paulina Tindana, Aminu Yakubu, Ciara Staunton, Alice Matimba, Katherine Littler, Ebony Madden, Nchangwi Syntia Munung & Jantina de Vries - 2019 - BMC Medical Ethics 20 (1):1-7.
    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 Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the (...)
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  25.  47
    A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research.Jantina de Vries, Akin Abayomi, James Brandful, Katherine Littler, Ebony Madden, Patricia Marshall, Odile Ouwe Oukem-Boyer & Janet Seeley - 2014 - BMC Medical Ethics 15 (1):60.
    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, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines.
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  26.  55
    Knowing who to trust: exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa.Jantina de Vries, Thomas N. Williams, Kalifa Bojang, Dominic P. Kwiatkowski, Raymond Fitzpatrick & Michael Parker - 2014 - BMC Medical Ethics 15 (1):62.
    The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...)
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  27.  61
    Psychiatric Genomics: Ethical Implications for Public Health in Lower- and Middle-Income Countries.Ilina Singh, Dorcas Kamuya, Dan J. Stein & Jantina de Vries - 2017 - American Journal of Bioethics 17 (4):17-19.
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  28.  25
    A scoping review of considerations and practices for benefit sharing in biobanking.Dorcas Kamuya, Jantina De Vries & Allan Sudoi - 2021 - BMC Medical Ethics 22 (1):1-16.
    BackgroundDespite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations (...)
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  29.  33
    Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa.Laura J. Heathfield, Sairita Maistry, Lorna J. Martin, Raj Ramesar & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):1-8.
    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 studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. Main body This article discusses some of the ethical challenges that were encountered in these research projects. Among (...)
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  30.  61
    Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study.Megan M. Campbell, Jantina de Vries, Sibonile G. Mqulwana, Michael M. Mndini, Odwa A. Ntola, Deborah Jonker, Megan Malan, Adele Pretorius, Zukiswa Zingela, Stephanus Van Wyk, Dan J. Stein & Ezra Susser - 2018 - BMC Medical Ethics 19 (1):72.
    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 research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during (...)
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  31.  7
    Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.Faith Musvipwa, Ambroise Wonkam, Benjamin Berkman & Jantina de Vries - 2024 - BMC Medical Ethics 25 (1):1-11.
    Background Genetic research can yield information that is unrelated to the study’s objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent. Methods We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research (...)
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  32.  27
    Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa.Laura J. Heathfield, Sairita Maistry, Lorna J. Martin, Raj Ramesar & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):66.
    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 studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. This article discusses some of the ethical challenges that were encountered in these research projects. Among these challenges was (...)
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  33. Seeking consent to genetic and genomic research in a rural Ghanaian setting: A qualitative study of the MalariaGEN experience. [REVIEW]Paulina Tindana, Susan Bull, Lucas Amenga-Etego, Jantina de Vries, Raymond Aborigo, Kwadwo Koram, Dominic Kwiatkowski & Michael Parker - 2012 - BMC Medical Ethics 13 (1):15-.
    Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...)
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  34.  10
    Deception and self‐deception in health care.Jan M. A. de Vries & Fiona Timmins - 2016 - Nursing Philosophy 17 (3):163-172.
    Deception is part of the natural repertoire of adaptive behaviours in many organisms. In humans we see it in all domains of human activity including health care. Within health care, deception can be a matter of concern, but it is also used to protect patients, for instance against overwhelming and negative diagnostics. This paper demonstrates that deception and self‐deception are closely interlinked and that self‐deception facilitates deception. Furthermore, self‐deception tends to be used to reduce the discomfort we feel when we (...)
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  35.  45
    Deliberation to Promote Shared Sovereignty in Health Research: Four Questions to Clarify Goals, Methods, and Scope.Jantina de Vries, Syntia Nchangwi Munung & Paulina Tindana - 2016 - American Journal of Bioethics 16 (10):50-52.
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  36.  29
    Ethical Challenges in Contemporary FASD Research and Practice.Nina di Pietro, Jantina de Vries, Angelina Paolozza, Dorothy Reid, James N. Reynolds, Amy Salmon, Marsha Wilson, Dan J. Stein & Judy Illes - 2016 - Cambridge Quarterly of Healthcare Ethics 25 (4):726-732.
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  37. The Present State of Studies On Germanic Religion.Jan de Vries - 1957 - Diogenes 5 (18):78-92.
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  38.  31
    Epistemic justice, African values and feedback of findings in African genomics research.Cornelius Ewuoso, Ambroise Wonkam & Jantina de Vries - 2022 - Global Bioethics 33 (1):122-132.
    This article draws on key normative principles grounded in important values – solidarity, partiality and friendliness – in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may (...)
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  39.  3
    Setting Research Priorities.Tom Obengo & Jantina de Vries - 2023 - In Susan Bull, Michael Parker, Joseph Ali, Monique Jonas, Vasantha Muthuswamy, Carla Saenz, Maxwell J. Smith, Teck Chuan Voo, Katharine Wright & Jantina de Vries (eds.), Research Ethics in Epidemics and Pandemics: A Casebook. Springer Verlag. pp. 23-40.
    Time and resource constraints, combined with competing priorities, mean that research prioritization is a critical ethical consideration in pandemics and emergencies, given the increased need for relevant research findings to address health needs, and the multiple adverse ways that emergencies can impact capacities to conduct research. At international, national and local levels, careful consideration is needed of which research topics should be prioritized and on what grounds. This needs to take into account the ethically significant considerations that should inform prioritization; (...)
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  40. The Problem of the Fairy Tale.Jan de Vries & Edith Cooper - 1958 - Diogenes 6 (22):1-15.
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  41. The Enigma of the Icelandic Saga.Jan De Vries & Victor A. Velen - 1964 - Diogenes 12 (46):69-81.
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  42.  17
    Addressing exploitation and inequities in open science: A relational perspective.Cornelius Ewuoso, Luís Cordeiro-Rodrigues, Ambroise Wonkam & Jantina de Vries - 2023 - Developing World Bioethics 23 (4):331-343.
    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 critical concerns regarding exploitation in the sharing of research resources to facilitate open partnership/collaboration and (...)
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  43.  10
    Feeding back of individual genetic results in Botswana: mapping opportunities and challenges.Mary Kasule, Mogomotsi Matshaba, Ambroise Wonkam & Jantina de Vries - 2023 - BMC Medical Ethics 24 (1):1-10.
    Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. Methods Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of (...)
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  44.  5
    Research Ethics in Epidemics and Pandemics: A Casebook.Susan Bull, Michael Parker, Joseph Ali, Monique Jonas, Vasantha Muthuswamy, Carla Saenz, Maxwell J. Smith, Teck Chuan Voo, Katharine Wright & Jantina de Vries (eds.) - 2023 - Springer Verlag.
    This open access casebook addresses complex and important ethical challenges arising when health-related research in conducted in the context of epidemics and pandemics. This book provides contextually-rich real-world case studies illustrating research ethics issues encountered by researchers, ethics reviewers and regulators around the globe during the COVID-19 pandemic. The accompanying commentaries outline relevant conceptual approaches and ethical considerations. These promote understanding and reflection on relevant ethical issues, ethical approaches and competing considerations in a manner supporting thoughtful evaluation of their implications (...)
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  45.  49
    Poverty and capitalism.Jan De Vries - 1983 - Theory and Society 12 (2):245-255.
  46.  20
    Social and Epistemic Justice: Are We Really Including Africa in the Bioethics Discourse?Jantina De Vries & Olivia P. Matshabane - 2022 - American Journal of Bioethics 22 (1):30-32.
    In their article, Fabi and Goldberg discuss concerns of racial injustice and the continued exclusion of people—based on race—in ethics research funding allocation, and how that impacts knowl...
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  47.  13
    Should institutions fund the feedback of individual findings in genomic research?Cornelius Ewuoso, Benjamin Berkman, Ambroise Wonkam & Jantina de Vries - forthcoming - Journal of Medical Ethics.
    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 in research by mostly appealing to dominant principles and theories in the Global (...)
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  48.  9
    Art in History, History in Art: Studies in Seventeenth-century Dutch Culture.David Freedberg & Jan De Vries - 1991 - Getty Center for the History of Art and the Humanities.
    Introduction Introduction / Jan de Vries 1 Art in History / Gary Schwartz 7 History in Art / J. W. Smit 17 Pt. I Art and Reality Market Scenes As Viewed by an Art Historian / Linda Stone-Ferrier 29 Market Scenes As Viewed by a Plant Biologist / Willem A. Brandenburg 59 Marine Paintings and the History of Shipbuilding / Richard W. Unger 75 Skies and Reality in Dutch Landscape / John Walsh 95 Some Notes on Interpretation / E. de (...)
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  49.  19
    Towards equitable genomics governance in Africa: Guiding principles from theories of global health governance and the African moral theory of Ubuntu.Nchangwi Syntia Munung, Jantina de Vries & Bridget Pratt - 2022 - Bioethics 36 (4):411-422.
    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 capacity in Africa and associated macro‐level justice issues such as benefit sharing, inequitable international research collaborations, (...)
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  50.  11
    Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.Dimpho Ralefala, Mary Kasule, Olivia P. Matshabane, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2023 - Global Bioethics 34 (1):1-14.
    Key to discussions around feedback of individual results from genomics research are practical questions on how such results should be fed back, by who and when. However, there has been virtually no work investigating these practical considerations for feedback of individual genetic results in the context of low-and middle-income countries (LMICs), especially in Africa. Consequently, we conducted deliberative focus group discussions with 6 groups of adolescents (n = 44) who previously participated in a genomics study in Botswana as well as (...)
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