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  1. Use of Broad Consent and Related Procedures in Genomics Research: Perspectives From Research Participants in the Genetics of Rheumatic Heart Disease 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 - Global Bioethics:1-16.
    ABSTRACTThe 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...
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  • Voluntary Participation and Comprehension of Informed Consent in a Genetic Epidemiological Study of Breast Cancer in Nigeria.Patricia A. Marshall, Clement A. Adebamowo, Adebowale A. Adeyemo, Temidayo O. Ogundiran, Teri Strenski, Jie Zhou & Charles N. Rotimi - 2014 - BMC Medical Ethics 15 (1):38.
    Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups.
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  • Hidden Concerns of Sharing Research Data by Low/Middle-Income Country Scientists.Louise Bezuidenhout & Ereck Chakauya - 2018 - Global Bioethics 29 (1):39-54.
    ABSTRACTThere has considerable interest in bringing low/middle-income countries scientists into discussions on Open Data – both as contributors and users. The establishment of in situ data sharing practices within LMIC research institutions is vital for the development of an Open Data landscape in the Global South. Nonetheless, many LMICs have significant challenges – resource provision, research support and extra-laboratory infrastructures. These low-resourced environments shape data sharing activities, but are rarely examined within Open Data discourse. In particular, little attention is given (...)
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  • 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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  • Regulatory Landscape of International Direct-to-Participant Genomic Research: Time to Untie the Gordian Knot?Mark A. Rothstein, Ma'N. H. Zawati & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (2):336-341.
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  • 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 - Global Bioethics:1-15.
    ABSTRACTPrevious research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Afri...
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  • 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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  • “That is Why I Have Trust”: Unpacking What ‘Trust’ Means to Participants in International Genetic Research in Pakistan and Denmark.Zainab Sheikh & Klaus Hoeyer - 2018 - Medicine, Health Care and Philosophy 21 (2):169-179.
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  • Does Science Need Bioethicists? Ethics and Science Collaboration in Biomedical Research.Angeliki Kerasidou & Michael Parker - 2014 - Research Ethics 10 (4):214-226.
    Biomedical research is an increasingly multidisciplinary activity bringing together a range of different academic fields and forms of expertise to investigate diseases that are increasingly understood to be complex and multifactorial. Recently the discipline of ethics has been starting to find a place in large-scale biomedical collaborations. In this article we draw from our experience of working with the Malaria Genomic Epidemiology Network and other research projects to reflect upon the integration of ethics into biomedical research. We examine the way (...)
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  • Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa.Ciara Staunton, Paulina Tindana, Melany Hendricks & Keymanthri Moodley - 2018 - BMC Medical Ethics 19 (1):13.
    Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective (...)
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  • Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries.Angeliki Kerasidou - 2015 - Developing World Bioethics 15 (3):267-274.
    Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such (...)
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  • Moral and Scientific Boundaries: Research Ethics on the Thai-Burma Border.M. J. Parker - 2012 - Journal of Medical Ethics 38 (9):559-560.
  • Equitable Access to Human Biological Resources in Developing Countries: Benefit Sharing Without Undue Inducement.Roger Scarlin Chennells - unknown
    The main research question of this thesis is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed to achieve equity for developing countries? Access to and benefit sharing for human biological resources is not regulated through an international legal framework such as the Convention on Biological Diversity, which applies only to plants, animals and micro-organisms as well as associated traditional knowledge. This legal vacuum for the governance of human genetic resources can be attributed (...)
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  • Seeking Consent to Genetic and Genomic Research in a Rural Ghanaian Setting: A Qualitative Study of the MalariaGEN Experience. [REVIEW]P. Tindana, S. Bull, L. Amenga-Etego, J. Vries, R. Aborigo, K. Koram, D. Kwiatkowski & M. Parker - 2012 - BMC Medical Ethics 13 (1):15-15.
    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.
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  • “The Keeping is the Problem”: A Qualitative Study of IRB-Member Perspectives in Botswana on the Collection, Use, and Storage of Human Biological Samples for Research.Francis Barchi, Keikantse Matlhagela, Nicola Jones, Poloko M. Kebaabetswe & Jon F. Merz - 2015 - BMC Medical Ethics 16 (1):1-11.
    BackgroundConcurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, (...)
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  • Legal Implications of Data Sharing in Biobanking Research in Low-Income Settings: The Nigerian Experience.Simisola Oluwatoyin Akintola - 2018 - South African Journal of Bioethics and Law 11 (1):15.
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  • The Elusive Ideal of Inclusiveness: Lessons From a Worldwide Survey of Neurologists on the Ethical Issues Raised by Whole-Genome Sequencing.Thierry Hurlimann, Iris Jaitovich Groisman & Béatrice Godard - 2017 - BMC Medical Ethics 18 (1):28.
    The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders’ perspectives on the use of such technologies. Within the framework of a research project entitled “Personalized medicine in the treatment of epilepsy”, we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists (...)
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  • “It’s all about trust”: reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.Keymanthri Moodley & Shenuka Singh - 2016 - BMC Medical Ethics 17 (1):57.
    Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers (...)
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  • Understandings of Genomic Research in Developing Countries: A Qualitative Study of the Views of MalariaGEN Participants in Mali.Karim Traore, Susan Bull, Alassane Niare, Salimata Konate, Mahamadou A. Thera, Dominic Kwiatkowski, Michael Parker & Ogobara K. Doumbo - 2015 - BMC Medical Ethics 16 (1):1-10.
    BackgroundObtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers’ and participants’ parents’ experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. (...)
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  • 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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  • 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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  • 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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  • Ethical and Legal Implications of Whole Genome and Whole Exome Sequencing in African Populations.Galen Wright, Pieter Koornhof, Adebowale Adeyemo & Nicki Tiffin - 2013 - BMC Medical Ethics 14 (1):21.
    Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for (...)
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  • Ethical Issues in the Export, Storage and Reuse of Human Biological Samples in Biomedical Research: Perspectives of Key Stakeholders in Ghana and Kenya.Paulina Tindana, Catherine S. Molyneux, Susan Bull & Michael Parker - 2014 - BMC Medical Ethics 15 (1):76.
    For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics (...)
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  • Genomic Sovereignty and the African Promise: Mining the African Genome for the Benefit of Africa.J. de Vries & M. 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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  • “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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  • Debating the Cause of Health Disparities.Dorothy Roberts - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (3):332-341.
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  • Community Members' Engagement with and Involvement in Genomic Research: Lessons to Learn From the Field.Morenike O. Folayan, Kolawole S. Oyedeji & Olawunmi A. Fatusi - 2015 - Developing World Bioethics 15 (1):1-7.
    In this paper, we describe the potential role laypersons on ethics committees can play in ensuring community concerns are addressed in the design and implementation of genomic research. We draw inferences from the outcome of an empirical study of the impact of training of laypersons to address community engagement issues in ethics review of research protocol. While this paper does not advocate a particular solution, it describes the importance of community engagement in genomic research, the current limitations there are in (...)
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  • Ethical Challenges in Integrating Patient-Care with Clinical Research in a Resource-Limited Setting: Perspectives From Papua New Guinea. [REVIEW]Moses Laman, William Pomat, Peter Siba & Inoni Betuela - 2013 - BMC Medical Ethics 14 (1):29.
    In resource-limited settings where healthcare services are limited and poverty is common, it is difficult to ethically conduct clinical research without providing patient-care. Therefore, integration of patient-care with clinical research appears as an attractive way of conducting research while providing patient-care. In this article, we discuss the ethical implications of such approach with perspectives from Papua New Guinea.
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  • 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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