11 found
Order:
  1.  34
    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.
  2.  23
    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.
    Direct download (10 more)  
     
    Export citation  
     
    Bookmark   9 citations  
  3.  11
    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 - 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 comprehe...
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  4.  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 - 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...
    No categories
    Direct download (9 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  5.  4
    Understanding Hard-to-Reach Communities: Local Perspectives and Experiences of Trachoma Control Among the Pastoralist Maasai in Northern Tanzania.Tara B. Mtuy, Kevin Bardosh, Jeremiah Ngondi, Upendo Mwingira, Janet Seeley, Matthew Burton & Shelley Lees - forthcoming - Journal of Biosocial Science:1-20.
    As progress to eliminate trachoma is made, addressing hard-to-reach communities becomes of greater significance. Areas in Tanzania, inhabited by the Maasai, remain endemic for trachoma. This study assessed the effectiveness of Mass Drug Administration through an ethnographic study of trachoma amongst a Maasai community. The MDA experience in the context of the livelihoods of the Maasai in a changing political economy was explored using participant observation and household interviews. Factors influencing MDA effectiveness within five domains were analysed. 1) Terrain of (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  6.  11
    Volunteer Experiences and Perceptions of the Informed Consent Process: Lessons From Two HIV Clinical Trials in Uganda.Agnes Ssali, Fiona Poland & Janet Seeley - 2015 - BMC Medical Ethics 16 (1):1-14.
    BackgroundInformed consent as stipulated in regulatory human research guidelines requires that a volunteer is well-informed about what will happen to them in a trial. However researchers are faced with a challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. We conducted a qualitative study among volunteers taking part in two HIV clinical trials in Uganda to find out how they defined informed consent and their perceptions of the trial procedures, study (...)
    Direct download (8 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  7.  11
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  8. 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  9.  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 - Global Bioethics:1-16.
    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 i...
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  10.  2
    A Reflection on Ethical and Methodological Challenges of Using Separate Interviews with Adolescent-Older Carer Dyads in Rural South Africa.Dumile Gumede, Nothando B. Ngwenya, Stella Namukwaya, Sarah Bernays & Janet Seeley - 2019 - BMC Medical Ethics 20 (1):47.
    This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. Drawing from the relational (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  11.  11
    Considerations for a Human Rights Impact Assessment of a Population Wide Treatment for HIV Prevention Intervention.Johanna Hanefeld, Virginia Bond, Janet Seeley, Shelley Lees & Nicola Desmond - 2015 - Developing World Bioethics 15 (3):115-124.
    Increasing attention is being paid to the potential of anti-retroviral treatment for HIV prevention. The possibility of eliminating HIV from a population through a universal test and treat intervention, where all people within a population are tested for HIV and all positive people immediately initiated on ART, as part of a wider prevention intervention, was first proposed in 2009. Several clinical trials testing this idea are now in inception phase. An intervention which relies on universally testing the entire population for (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark