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  1. Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.Abimbola M. Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L. Adeyemo, Lord J. J. Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A. Adeyemo, Peter A. Mossey, Anya Prince, Jeffrey C. Murray & Azeez Butali - 2024 - AJOB Empirical Bioethics 15 (2):133-146.
    Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...)
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  • Assent, parental consent and reconsent for health research in Africa: thematic analysis of national guidelines and lessons from the SickleInAfrica registry.Ambroise Wonkam, Charmaine Royale, Kofi Anie, Malula Nkanyemka, Hilda Tutuba, Daima Bukini, Okocha Emmanuel Chide, Marsha Treadwell, Lawrence Osei-Tutu, Victoria Nembaware & Nchangwi Syntia Munung - 2022 - BMC Medical Ethics 23 (1):1-10.
    The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age group required to provide written assent; content of assent forms; if separate assent and parental consent forms should be used, consent from emancipated young adults; reconsent at the age of adulthood when a waiver of assent requirements may be appropriate and the conditions for (...)
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  • 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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  • Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria.Rasheed O. Taiwo, John Ipadeola, Temilola Yusuf, Faith Fagbohunlu, Gbemisola Jenfa, Sally N. Adebamowo & Clement A. Adebamowo - 2020 - BMC Medical Ethics 21 (1):1-8.
    Background With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. Methods We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders among (...)
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  • Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Oksana N. Sulaieva, Oksana Artamonova, Oleksandr Dudin, Rostyslav Semikov, Dmytro Urakov, Yurii Zakharash, Arman Kacharian, Vasyl Strilka, Ivan Mykhalchuk, Oleksii Haidamak, Olena Serdyukova & Nazarii Kobyliak - forthcoming - Journal of Medical Ethics.
    Building a biobank network in developing countries is essential to foster genomic research and precision medicine for patients’ benefit. However, there are serious barriers to establishing biobanks in low-income and middle-income countries (LMICs), including Ukraine. Here, we outline key barriers and essential milestones for the successful expansion of biobanks, genomic research and personalised medicine in Ukraine, drawing from the experience of other LMICs. A lack of legal and ethical governance in conjunction with limited awareness about biobanking and community distrust are (...)
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  • Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities.Baergen Schultz, Francis E. Agamah, Cornelius Ewuoso, Ebony B. Madden, Jennifer Troyer, Michelle Skelton & Erisa Mwaka - 2024 - Journal of Medical Ethics 50 (1):57-61.
    In July 2020, the H3Africa Ethics and Community Engagement (E&CE) Working Group organised a webinar with ethics committee members and biomedical researchers from various African institutions throughout the Continent to discuss the issue of whether and how biological samples for scientific research may be accessed by commercial entities when broad consents obtained for the samples are silent. 128 people including Research Ethics Committee members (10), H3Africa researchers (46) including members of the E&CE working group, biomedical researchers not associated with H3Africa (...)
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  • Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations.Mark A. Rothstein, Ma'N. H. Zawati, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Catherine M. Hammack-Aviran, James W. Hazel, Yann Joly, Michael Lang, Dimitri Patrinos, Andrea Saltzman & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (4):705-731.
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  • Stakeholder views on informed consent models for future use of biological samples in Malawi and South Africa.Stuart Rennie, Walter Jaoko & Francis Masiye - 2023 - BMC Medical Ethics 24 (1):1-10.
    BackgroundCurrent advances in biomedical research have introduced new ethical challenges in obtaining informed consent in low and middle-income settings. For example, there are controversies about the use of broad consent in the collection of biological samples for use in future biomedical research. However, few studies have explored preferred informed consent models for future use of biological samples in Malawi and South Africa. Therefore, we conducted an empirical study to understand preferred consent models among key stakeholders in biomedical studies that involve (...)
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  • A scoping review of genetics and genomics research ethics policies and guidelines for Africa.Joseph Ochieng, Nelson K. Sewankambo, John Barugahare, Betty Kwagala, Juli M. Bollinger, Erisa Mwaka, Betty Cohn & Joseph Ali - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...)
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  • The role of science granting councils in promoting ethics in research and innovation: strategies used by selected African SGCs in promoting ethics in research and innovation.Paul Ndebele, Zivai Nenguke, Tiwonge Mtande, Kachedwa Mike, Samba Corr, Matandika Limbanazo, Lillian Naigaga Mutengu, Jonathan Mba & Maurice Bolo - 2023 - International Journal of Ethics Education 8 (2):373-387.
    The Science Granting Councils Initiative (SGCI) in Africa aims to strengthen the capacities of selected science granting councils (SGCs) in sub-Saharan Africa in order to support research and evidence-based policies that will contribute to Africa’s economic and social development. As part of SGCI, a study was conducted in 2021 to investigate strategies that have been adopted by fifteen SGCs participating in SGCI in promoting ethical practice in research and innovation. Data collection for the study was mainly based on a data (...)
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  • It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV.Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Ian Guyton Munabi, Catriona Waitt & Erisa S. Mwaka - 2024 - Research Ethics 20 (2):363-387.
    This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five (...)
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  • 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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  • Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study.Erisa Sabakaki Mwaka, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi & David Kaawa-Mafigiri - 2021 - Global Bioethics 32 (1):15-33.
    Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to (...)
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  • A qualitative study exploring stakeholder perspectives on the use of biological samples for future unspecified research in Malawi.Limbanazo Matandika, Ruby Tionenji Ngóngóla, Khama Mita, Lucinda Manda-Taylor, Kate Gooding, Daniel Mwale, Francis Masiye & Joseph Mfutso-Bengo - 2020 - BMC Medical Ethics 21 (1):1-10.
    BackgroundThere is growing interest in the collection, storage and reuse of biological samples for future research. Storage and future use of biological samples raise ethical concerns and questions about approaches that safeguard the interests of participants. The situation is further complicated in Africa where there is a general lack of governing ethical frameworks that could guide the research community on appropriate approaches for sample storage and use. Furthermore, there is limited empirical data to guide development of such frameworks. A qualitative (...)
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  • Human Biobanking in Developed and Developing Countries: An Ethico-Legal Comparative Analysis of the Frameworks in the United Kingdom, Australia, Uganda, and South Africa.Safia Mahomed - 2021 - Cambridge Quarterly of Healthcare Ethics 30 (1):146-160.
    Although the concept of biobanking is not new, the open and evolving nature of biobanks has created profound ethical, legal, and social implications, including issues around informed consent, community engagement, secondary uses of materials over time, ownership of materials, data sharing, and privacy. Complexities also emerge because of increasing international collaborations and differing national positions. In addition, the degrees and topics of concern vary as legislative, ethical, and social frameworks differ across developed and developing countries. Implementing national laws in an (...)
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  • Ethical and Equitable Digital Health Research: Ensuring Self-Determination in Data Governance for Racialized Communities.Mozharul Islam, Arafaat A. Valiani, Ranjan Datta, Mohammad Chowdhury & Tanvir C. Turin - forthcoming - Cambridge Quarterly of Healthcare Ethics:1-11.
    Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors and builds on Indigenous (...)
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  • 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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  • Preventing ethics dumping: the challenges for Kenyan research ethics committees.Kate Chatfield, Doris Schroeder, Anastasia Guantai, Kirana Bhatt, Elizabeth Bukusi, Joyce Adhiambo Odhiambo, Julie Cook & Joshua Kimani - 2021 - Research Ethics 17 (1):23-44.
    Ethics dumping is the practice of undertaking research in a low- or middle-income setting which would not be permitted, or would be severely restricted, in a high-income setting. Whilst Kenya operates a sophisticated research governance system, resource constraints and the relatively low number of accredited research ethics committees limit the capacity for ensuring ethical compliance. As a result, Kenya has been experiencing cases of ethics dumping. This article presents 11 challenges in the context of preventing ethics dumping in Kenya, namely (...)
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  • Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.Gershim Asiki, Michele Ramsay, Anita Ghansah, Paulina Tindana, Catherine Kyobutungi, Shukri F. Mohamed & Isaac Kisiangani - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.MethodsThis qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. (...)
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  • Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience.Simisola Oluwatoyin Akintola - 2018 - South African Journal of Bioethics and Law 11 (1):15.
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