34 found
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  1.  33
    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 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 issues (...)
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  2.  54
    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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  3.  35
    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.
  4.  18
    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):8.
    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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  5.  26
    Community Engagement Strategies for Genomic Studies in Africa: A Review of the Literature. [REVIEW]Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu & Michael Parker - 2015 - BMC Medical Ethics 16 (1):24.
    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 tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.
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  6. 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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  7.  13
    Community Engagement in Global Health Research That Advances Health Equity.Bridget Pratt & Jantina de Vries - 2018 - Bioethics 32 (7):454-463.
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  8.  21
    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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  9.  4
    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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  10.  12
    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 - forthcoming - Tandf: Global Bioethics:1-16.
  11.  9
    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 - forthcoming - Tandf: Global Bioethics:1-15.
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  12.  6
    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 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 (...)
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  13.  16
    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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  14.  3
    “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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  15.  10
    "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.  6
    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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  17.  64
    The Obesity Epidemic: Medical and Ethical Considerations. [REVIEW]Jantina de Vries - 2007 - Science and Engineering Ethics 13 (1):55-67.
    Obesity is increasingly becoming a problem for Western societies, to the extent that politicians, scientists, patient organisations and the media now refer to it as ‘the obesity epidemic’. Concerns about the damaging effect of increasing body weight on public health has led to a strong growth in the amount of scientific work on the condition, with the medical professions leading the way. This article discusses that, first of all, scientific evidence for obesity-associated mortality is at best ambiguous, and proposes that (...)
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  18.  10
    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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  19.  2
    Informed Consent in Genomic Research and Biobanking: Taking Feedback of Findings Seriously.Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley & Michael Parker - forthcoming - Tandf: Global Bioethics:1-16.
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  20.  25
    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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  21.  32
    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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  22.  5
    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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  23.  10
    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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  24.  25
    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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  25.  16
    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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  26.  12
    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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  27.  4
    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 - forthcoming - Medicine, Health Care and Philosophy.
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  28.  4
    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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  29.  3
    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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  30. A Perpetual Source of DNA or Something Really Different: Ethical Issues in the Creation of Cell Lines for African Genomics Research.Janet Seeley, Odile Ouwe Missi Oukem-Boyer, Patricia Marshall, Ebony Madden, Katherine Littler, James Brandful, Akin Abayomi & Jantina de Vries - 2014 - BMC Medical Ethics 15 (1).
    BackgroundThe 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.DiscussionThe first challenge we identified relates to the moral status of cells living in culture. There is no (...)
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  31.  1
    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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  32.  5
    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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  33.  16
    Would You Terminate a Pregnancy Affected by Sickle Cell Disease?: Analysis of Views of Patients in Cameroon.Ambroise Wonkam, Jantina de Vries, Charmaine Royal, Raj Ramesar & I. I. I. Fru Angwafo - 2014 - Journal of Medical Ethics 40 (9):615-620.
    Sickle cell disease is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been investigated (...)
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  34.  1
    Would You Terminate a Pregnancy Affected by Sickle Cell Disease? Analysis of Views of Patients in Cameroon.Ambroise Wonkam, Jantina de Vries, Charmaine D. Royal, Raj Ramesar & Fru F. Angwafo - 2014 - Journal of Medical Ethics 40 (9):615-620.
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