12 found
  1. Open science, data sharing and solidarity: who benefits?Ciara Staunton, Carlos Andrés Barragán, Stefano Canali, Calvin Ho, Sabina Leonelli, Matthew Mayernik, Barbara Prainsack & Ambroise Wonkham - 2021 - History and Philosophy of the Life Sciences 43 (4):1-8.
    Research, innovation, and progress in the life sciences are increasingly contingent on access to large quantities of data. This is one of the key premises behind the “open science” movement and the global calls for fostering the sharing of personal data, datasets, and research results. This paper reports on the outcomes of discussions by the panel “Open science, data sharing and solidarity: who benefits?” held at the 2021 Biennial conference of the International Society for the History, Philosophy, and Social Studies (...)
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  2.  38
    Healing Without Waging War: Beyond Military Metaphors in Medicine and HIV Cure Research.Jing-Bao Nie, Adam Gilbertson, Malcolm de Roubaix, Ciara Staunton, Anton van Niekerk, Joseph D. Tucker & Stuart Rennie - 2016 - American Journal of Bioethics 16 (10):3-11.
    Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this article, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and Chinese and (...)
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  3.  46
    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.  27
    Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - 2021 - Journal of Medical Ethics 47 (7):522-525.
    Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...)
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  5.  13
    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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  6. Challenges in biobank governance in Sub-Saharan Africa.Ciara Staunton & Keymanthri Moodley - 2013 - BMC Medical Ethics 14 (1):35.
    Biological sample and data transfer within and out of Africa is steeped in controversy With the H3Africa project now aiming to establish biobanks in Africa, it is essential that there are ethical and legal governance structures in place to oversee the operation of these biobanks. Such governance is essential to ensuring that donors are protected, that cultural perspectives are respected and that researchers have a ready availability of ethically sourced biological samples.
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  7.  22
    Informed consent for HIV cure research in South Africa: issues to consider.Ciara Staunton - 2015 - BMC Medical Ethics 16 (1):3.
    South Africa has made great progress in the development of HIV/AIDS testing, treatment and prevention campaigns. Yet, it is clear that prevention and treatment campaigns alone are not enough to bring this epidemic under control.
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  8.  12
    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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  9.  43
    Synergies, tensions and challenges in HIV prevention, treatment and cure research: exploratory conversations with HIV experts in South Africa.Keymanthri Moodley, Theresa Rossouw, Ciara Staunton & Christopher J. Colvin - 2016 - BMC Medical Ethics 17 (1):26.
    BackgroundThe ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa over the past 3 decades. However, HIV cure research is relatively new to the region and significant ethical and social challenges are anticipated. There has been no published empirical enquiry in Africa into key informant perspectives on HIV cure research. Consequently, this study was conducted to gain preliminary data from South African HIV clinicians, researchers and activists.MethodsIn-depth interviews were conducted on a purposive sample (...)
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  10.  22
    The psychology of “cure” - unique challenges to consent processes in HIV cure research in South Africa.Keymanthri Moodley, Ciara Staunton, Theresa Rossouw, Malcolm de Roubaix, Zoe Duby & Donald Skinner - 2019 - BMC Medical Ethics 20 (1):9.
    Consent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. HIV cure/eradication research is scientifically more complex and consequently, consent processes for clinical trials in this field are likely to pose a significant challenge. Given that research efforts are now moving toward HIV eradication, stakeholder engagement to inform appropriate ethics oversight of such research is timely. This study sought to establish the perspectives of a wide range of stakeholders in HIV treatment (...)
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  11.  48
    The implications of Methylphenidate use by healthy medical students and doctors in South Africa.Chad Beyer, Ciara Staunton & Keymanthri Moodley - 2014 - BMC Medical Ethics 15 (1):20.
    The use of medical stimulants to sustain attention, augment memory and enhance intellectual capacity is increasing in society. The use of Methylphenidate for cognitive enhancement is a subject that has received much attention in the literature and academic circles in recent times globally. Medical doctors and medical students appear to be equally involved in the off-label use of Methylphenidate. This presents a potential harm to society and the individual as the long-term side effect profile of this medication is unknown.
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    A Framework to Govern the Use of Health Data for Research in Africa: A South African Perspective.Ciara Staunton, Rachel Adams, Lyn Horn & Melodie Labuschaigne - 2022 - In Tomas Zima & David N. Weisstub (eds.), Medical Research Ethics: Challenges in the 21st Century. Springer Verlag. pp. 485-499.
    Genomic and biobank research has undergone exponential growth in Africa. Traditionally this resulted in exploitative research practices in the form of so-called ‘parachute research’ with little or no consideration for capacity building. However there has been a recent growth of research and consortia where capacity building and equitable research have been a key objective of the research, and attention is now focused on the governance of this research. The importance of solidarity in genomic biobank research in high income countries is (...)
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