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  1.  78
    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.
    Background The rise in genomic and biobanking research worldwide has led to the development of different informed consent models for use in such research. This study analyses consent documents used by investigators in the H3Africa (Human Heredity and Health in Africa) Consortium. Methods A qualitative method for text analysis was used to analyse consent documents used in the collection of samples and data in H3Africa projects. Thematic domains included type of consent model, explanations of genetics/genomics, data sharing and feedback of (...)
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  2.  40
    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 - 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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  3.  21
    A chronological discourse analysis of ancillary care provision in guidance documents for research conduct in the global south.Blessings M. Kapumba, Nicola Desmond & Janet Seeley - 2022 - BMC Medical Ethics 23 (1):1-16.
    Introduction Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author (...)
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  4.  34
    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.
    ABSTRACT 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 (...)
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  5.  36
    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.  32
    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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  7.  21
    Respecting relational agency in the context of vulnerability: What can research ethics learn from the social sciences?Jennifer Roest, Busisiwe Nkosi, Janet Seeley, Sassy Molyneux & Maureen Kelley - 2023 - Bioethics 37 (4):379-388.
    Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts of structural and other sources of (...)
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  8.  57
    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 - 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 (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...)
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  9.  53
    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 (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...)
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  10.  24
    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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  11.  32
    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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  12.  22
    Investigation of post-trial access views among study participants and stakeholders using photovoice and semistructured interviews.Nothando Ngwenya, Collins Iwuji, Nabeel Petersen, Nompilo Myeni, Samukelisiwe Nxumalo, Ursula Ngema & Janet Seeley - 2022 - Journal of Medical Ethics 48 (10):712-717.
    Purpose We examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the ‘responsibility’ is understood. Methods We employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access. Results In their photovoice stories, many participants expressed a sense of abandonment after the trial. This (...)
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  13.  45
    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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  14.  34
    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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  15.  15
    A scoping review of ethics review processes during public health emergencies in Africa.Kingsley Orievulu, Alex Hinga, Busisiwe Nkosi, Nothando Ngwenya, Janet Seeley, Anthony Akanlu, Paulina Tindana, Sassy Molyneux, Samson Kinyanjui & Dorcas Kamuya - 2024 - BMC Medical Ethics 25 (1):1-15.
    Background The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs). Methods We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public (...)
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  16.  18
    Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study.Agnes Ssali, Rita Namugumya, Phiona Nalubega, Mary Kyohere, Janet Seeley & Kirsty Le Doare - 2024 - BMC Medical Ethics 25 (1):1-12.
    Background The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial. Methods We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group (...)
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  17.  19
    Beyond translations, perspectives for researchers to consider to enhance comprehension during consent processes for health research in sub-saharan Africa: a scoping review.Michael Parker, Ann Strode, Janet Seeley & Nkosi Busisiwe - 2023 - BMC Medical Ethics 24 (1):1-16.
    BackgroundLiterature on issues relating to comprehension during the process of obtaining informed consent (IC) has largely focused on the challenges potential participants can face in understanding the IC documents, and the strategies used to enhance comprehension of those documents. In this review, we set out to describe the factors that have an impact on comprehension and the strategies used to enhance the IC process in sub-Saharan African countries.MethodsFrom November 2021 to January 2022, we conducted a literature search using a PRISMA (...)
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  18.  22
    ‘Guidance should have been there 15 years ago’ research stakeholders’ perspectives on ancillary care in the global south: a case study of Malawi.Janet Seeley, Nicola Desmond, Deborah Nyirenda & Blessings M. Kapumba - 2023 - BMC Medical Ethics 24 (1):1-18.
    BackgroundMedical researchers in resource-constrained settings must make difficult moral decisions about the provision of ancillary care to participants where additional healthcare needs fall outside the scope of the research and are not provided for by the local healthcare system. We examined research stakeholder perceptions and experiences of ancillary care in biomedical research projects in Malawi. MethodsWe conducted 45 qualitative in-depth interviews with key research stakeholders: researchers, health officials, research ethics committee members, research participants and grants officers from international research funding (...)
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  19.  24
    Ethical and practical considerations arising from community consultation on implementing controlled human infection studies using Schistosoma mansoni in Uganda.Moses Egesa, Agnes Ssali, Edward Tumwesige, Moses Kizza, Emmanuella Driciru, Fiona Luboga, Meta Roestenberg, Janet Seeley & Alison M. Elliott - 2022 - Global Bioethics 33 (1):78-102.
    Issues related to controlled human infection studies using Schistosoma mansoni (CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a mock consent (...)
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  20.  26
    The ethical‐legal requirements for adolescent self‐consent to research in sub‐Saharan Africa: A scoping review.Busisiwe Nkosi, Brian Zanoni, Janet Seeley & Ann Strode - 2021 - Bioethics 36 (5):576-586.
    Bioethics, Volume 36, Issue 5, Page 576-586, June 2022.
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  21.  18
    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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  22.  29
    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 - 2013 - 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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  23.  19
    Editorial – ethical practice and genomic research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  24.  21
    Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.Janet Seeley, Emily B. Wong, Mark J. Siedner, Olivier Koole, Dickman Gareta, Resign Gunda, Dumsani Gumede, Nothando Ngwenya & Manono Luthuli - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that (...)
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  25.  64
    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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