17 found
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  1.  36
    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.  28
    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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  3.  6
    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 - 2019 - 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 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 staff (...)
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  4.  15
    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.
  5.  5
    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. (...)
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  6.  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 - Tandf: Global Bioethics:1-15.
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  7.  9
    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 (...)
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  8.  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 - Tandf: Global Bioethics:1-16.
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  9.  12
    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.
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  10.  12
    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 (...)
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  11.  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 (...)
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  12.  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 (...)
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  13.  5
    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 (...)
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  14.  1
    Editorial – Ethical Practice and Genomic Research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  15.  3
    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 - 2019 - 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 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 committee (...)
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  16. 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 (...)
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  17.  1
    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 (...)
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