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Susan Bull [17]Susan J. Bull [2]Susan D. Bull [1]
  1.  38
    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.  58
    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.  33
    Tailoring consent to context: designing an appropriate consent process for a biomedical study in a low income setting.Fasil Tekola, Susan J. Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - unknown
    Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...)
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  4.  27
    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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  5.  74
    Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study.Fasil Tekola, Susan Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - 2009 - BMC Medical Ethics 10 (1):13-.
    BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...)
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  6.  13
    ‘It is an entrustment’: Broad consent for genomic research and biobanks in Sub‐Saharan Africa.Paulina Tindana, Sassy Molyneux, Susan Bull & Michael Parker - 2017 - Developing World Bioethics.
    In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative, which has established biobanks in the sub-region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain (...)
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  7.  10
    Towards a new model of global health justice: the case of COVID-19 vaccines.Nancy S. Jecker, Caesar A. Atuire & Susan D. Bull - forthcoming - Journal of Medical Ethics.
    This paper questions an exclusively state-centred framing of global health justice and proposes a multilateral alternative. Using the distribution of COVID-19 vaccines to illustrate, we bring to light a broad range of global actors up and down the chain of vaccine development who contribute to global vaccine inequities. Section 1 (Background) presents an overview of moments in which diverse global actors, each with their own priorities and aims, shaped subsequent vaccine distribution. Section 2 (Collective action failures) characterises collective action failures (...)
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  8. Ethics in collaborative global health research networks.M. Parker & S. Bull - 2009 - Clinical Ethics 4 (4):165-168.
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  9.  32
    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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  10.  8
    COVID-19 Heightens the Imperative to Decolonize Global Health Research.Caesar Alimsinya Atuire & Susan Bull - 2022 - Global Justice: Theory Practice Rhetoric 13 (2):60-77.
    The COVID-19 pandemic has both highlighted and exacerbated global health inequities, leading for calls for responses to COVID to promote social justice and ensure that no one is left behind. One key lesson to be learnt from the pandemic is the critical importance of decolonizing global health and global health research so that African countries are better placed to address pandemic challenges in contextually relevant ways. This paper argues that to be successful, programmes of decolonization in complex global health landscapes (...)
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  11.  8
    SARS-CoV-2 challenge studies: ethics and risk minimisation.Susan Bull, Euzebiusz Jamrozik, Ariella Binik & Michael J. Parker - 2021 - Journal of Medical Ethics 47 (12):e79-e79.
    COVID-19 poses an exceptional threat to global public health and well-being. Recognition of the need to develop effective vaccines at unprecedented speed has led to calls to accelerate research pathways ethically, including by conducting challenge studies ) with SARS-CoV-2. Such research is controversial, with concerns being raised about the social, legal, ethical and clinical implications of infecting healthy volunteers with SARS-CoV-2 for research purposes. Systematic risk evaluations are critical to inform assessments of the ethics of any proposed SARS-CoV-2 CHIs. Such (...)
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  12.  9
    How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi.Helen Mangochi, Kate Gooding, Aisleen Bennett, Michael Parker, Nicola Desmond & Susan Bull - 2019 - BMC Medical Ethics 20 (1):32.
    Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines (...)
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  13.  24
    Ensuring Consent to Research is Voluntary: How Far Do We Need to Go?Susan Bull & Graham Charles Lindegger - 2011 - American Journal of Bioethics 11 (8):27-29.
    The American Journal of Bioethics, Volume 11, Issue 8, Page 27-29, August 2011.
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  14.  15
    Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agenda.Phaik Yeong Cheah, Nicholas P. J. Day, Michael Parker & Susan Bull - 2017 - Asian Bioethics Review 9 (4):393-400.
    Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data (...)
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  15.  16
    Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand.Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker & Susan Bull - 2018 - BMC Medical Ethics 19 (1):86.
    Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent (...)
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  16. Equitable data sharing in epidemics and pandemics.Susan Bull & Bridget Pratt - 2021 - BMC Medical Ethics 22 (1):1-14.
    BackgroundRapid data sharing can maximize the utility of data. In epidemics and pandemics like Zika, Ebola, and COVID-19, the case for such practices seems especially urgent and warranted. Yet rapidly sharing data widely has previously generated significant concerns related to equity. The continued lack of understanding and guidance on equitable data sharing raises the following questions: Should data sharing in epidemics and pandemics primarily advance utility, or should it advance equity as well? If so, what norms comprise equitable data sharing (...)
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  17.  1
    Measuring and Visualizing Learning in the Information-Rich Classroom.Peter Reimann, Susan Bull, Michael Kickmeier-Rust, Ravi Vatrapu & Barbara Wasson (eds.) - 2015 - Routledge.
    Integrated information systems are increasingly used in schools, and the advent of the technology-rich classroom requires a new degree of ongoing classroom assessment. Able to track web searches, resources used, task completion time, and a variety of other classroom behaviors, technology-rich classrooms offer a wealth of potential information about teaching and learning. This information can be used to track student progress in languages, STEM, and in 21st Century skills, for instance. However, despite these changes, there has been little change in (...)
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  18.  10
    Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam.Jennifer Ilo Van Nuil, Thi Thanh Thuy Nguyen, Thanh Nhan Le Nguyen, Van Vinh Chau Nguyen, Mary Chambers, Thi Dieu Ngan Ta, Laura Merson, Thi Phuong Dung Nguyen, Minh Tu Van Hoang, Michael Parker, Susan Bull & Evelyne Kestelyn - 2020 - BMC Medical Ethics 21 (1):1-12.
    Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...)
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  19.  3
    “Are we getting the biometric bioethics right?” – the use of biometrics within the healthcare system in Malawi.Mphatso Mwapasa, Kate Gooding, Moses Kumwenda, Marriott Nliwasa, Kruger Kaswaswa, Rodrick Sambakunsi, Michael Parker, Susan Bull & Nicola Desmond - 2020 - Global Bioethics 31 (1):67-80.
    Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns surrounding the appropriate use of biometrics have been raised, especial...
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  20.  3
    Fragmented understanding: exploring the practice and meaning of informed consent in clinical trials in Ho Chi Minh City, Vietnam.Jennifer Ilo Van Nuil, Evelyne Kestelyn, Susan Bull, Phu Hoan Nguyen, Phuong Thanh Le, Ngoc Bao Hong Lam, Thuan Trong Dang & Yen Hong Thi Nguyen - 2023 - BMC Medical Ethics 24 (1):1-13.
    BackgroundThe informed consent process in clinical trials has been extensively studied to inform the development processes which protect research participants and encourage their autonomy. However, ensuring a meaningful informed consent process is still of great concern in many research settings due to its complexity in practice and interwined socio-cultural factors.ObjectivesThis study explored the practices and meaning of the informed consent process in two clinial trials conducted by Oxford University Clinical Research Unit in collaboration with the Hospital for Tropical Diseases in (...)
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