Switch to: References

Add citations

You must login to add citations.
  1. 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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • 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 (...)
    No categories
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • 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. (...)
    No categories
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Incidental Findings in Low‐Resource Settings.Haley K. Sullivan & Benjamin E. Berkman - 2018 - Hastings Center Report 48 (3):20-28.
    Direct download  
     
    Export citation  
     
    Bookmark   8 citations  
  • 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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   12 citations  
  • 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.
    No categories
    Direct download (10 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • 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.
  • 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.
  • National Ethics Guidance in Sub-Saharan Africa on the Collection and Use of Human Biological Specimens: A Systematic Review.Francis Barchi & Madison T. Little - 2016 - BMC Medical Ethics 17 (1):64.
    BackgroundEthical and regulatory guidance on the collection and use of human biospecimens for research forms an essential component of national health systems in Sub-Saharan Africa, where rapid advances in genetic- and genomic-based technologies are fueling clinical trials involving HBS and the establishment of large-scale biobanks.MethodsAn extensive multi-level search for publicly available ethics regulatory guidance was conducted for each SSA country. A second review documented active trials listed in the WHO International Clinical Trials Registry Platform as of January 2015 in which (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Cybersecurity in Health – Disentangling Value Tensions.Michele Loi, Markus Christen, Nadine Kleine & Karsten Weber - 2019 - Journal of Information, Communication and Ethics in Society 17 (2):229-245.
    Purpose Cybersecurity in healthcare has become an urgent matter in recent years due to various malicious attacks on hospitals and other parts of the healthcare infrastructure. The purpose of this paper is to provide an outline of how core values of the health systems, such as the principles of biomedical ethics, are in a supportive or conflicting relation to cybersecurity. Design/methodology/approach This paper claims that it is possible to map the desiderata relevant to cybersecurity onto the four principles of medical (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Recruitment of Yoruba Families From Nigeria for Genetic Research: Experience From a Multisite Keloid Study.Peter B. Olaitan, Victoria Odesina, Samuel Ademola, Solomon O. Fadiora, Odunayo M. Oluwatosin & Ernst J. Reichenberger - 2014 - BMC Medical Ethics 15 (1):65.
    More involvement of sub-Saharan African countries in biomedical studies, specifically in genetic research, is needed to advance individualized medicine that will benefit non-European populations. Missing infrastructure, cultural and religious beliefs as well as lack of understanding of research benefits can pose a challenge to recruitment. Here we describe recruitment efforts for a large genetic study requiring three-generation pedigrees within the Yoruba homelands of Nigeria. The aim of the study was to identify genes responsible for keloids, a wound healing disorder. We (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark  
  • Ethical Responsibilities and Perceptions of Stakeholders of Genetic Research Involving Racial/Ethnic Minority Participants.Emmanuel M. Ngui, Teddy D. Warner & Laura Weiss Roberts - 2015 - Ajob Empirical Bioethics 6 (3):15-27.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark