Addressing ethical issues in H3Africa research – the views of research ethics committee members

Vries, Jantina de; Abayomi, Akin; Littler, Katherine; Madden, Ebony; McCurdy, Sheryl A.; Oukem‐Boyer, Odile Ouwe Missi; Seeley, Janet; Staunton, Ciara; Tangwa, Godfrey B.; Tindana, Paulina; Troyer, Jennifer L.

doi:10.1186/s11568-015-0006-6

Cited by 42 publications

(46 citation statements)

References 1 publication

(2 reference statements)

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“…To address this limitation, more studies are needed in Botswana that directly engage local communities in order to appreciate what is likely to be the broad range of understanding and opinion on ethical, legal, and social implications associated with biospecimens, particularly those collected as part of research biorepositories. The need for such discussions have been recently highlighted by the H3Africa Working Group on Ethics [ 47 ]. At the same time, opportunities for more in-depth debate among IRB members in Botswana regarding areas of concern to the constituencies they protect would help to tailor both future IRB-member training and public health outreach.…”

Section: Discussionmentioning

confidence: 99%

“The keeping is the problem”: A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

et al. 2015

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BackgroundConcurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens.MethodsThis qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance.ResultsAreas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods.ConclusionEducation is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.

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Section: Discussionmentioning

confidence: 99%

“The keeping is the problem”: A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

et al. 2015

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“…For example, despite the expectations of the international collaborative projects in the cross-border storage of human biospecimens and depositing of research results in consortia databases for access by scientists locally and abroad, differing terms and norms which are likely to present barriers to access and use are not well addressed. In addition, the unidirectional flow of samples and data out of Africa has created a sense of exploitation and distrust and the African genomics research community are playing a leading role in addressing such concerns and limitations as they become more likely to occur 12,13 .…”

Section: The Need For Elsi Research For Human Biobanking and Genomicsmentioning

confidence: 99%

Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative

et al. 2019

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Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society (GILES) initiative was established in 2015 to explore the current status and gaps in the ethical and legal frameworks, knowledge among various stakeholders, and to establish capacity for addressing ELSI of biobanking and genomics as applied in biomedical and population research, and healthcare. The project was conducted over a countrywide geographical region and established one of the most comprehensive studies for ELSI of human biobanking and genomics in Africa. This paper outlines the strategy undertaken during the implementation of the GILES initiative and discusses the importance of such an initiative for characterisation of ELSI of human biobanking and genomics in Zimbabwe and Africa.

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“…Recruitment of controls for SIREN genomics study: Tackling the burden of stroke and unraveling the reasons for its escalating epidemic requires an urgent need to determine the role of environmental and genetic factors to the risk and outcomes of stroke and its subtypes in SSA [ 1 , 19 ]. The aim of H3Africa, which is an international collaborative project, is to promote research in to the study of genomics and environmental determinants of common diseases with the goal of improving the health of African populations [ 9 , 20 ]. SIREN is similar to many of the H3Africa projects involved in the collection of human biological samples from research participants in African populations and community engagement has been identified as one of the key ethical issues by the H3Africa Working Group [ 9 , 20 – 22 ].…”

Section: Nigeria Study Sitesmentioning

confidence: 99%

Stroke Investigative Research and Education Network: Public Outreach and Engagement

Singh

Jenkins

Calys‐Tagoe

et al. 2017

J Community Med Health Educ

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Stroke is becoming a leading cause of disability and death, and a major public health concern in Sub-Saharan Africa (SSA). The Stroke Investigative Research and Education Network (SIREN) seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other non-communicable diseases in SSA. One of the first steps to address this goal was to effectively engage the communities that suffer high burdens of disease in SSA. This paper describes the process of SIREN project's community engagement activities in Ghana and Nigeria. The aims of community engagement (CE) within SIREN are to: i) elucidate information about knowledge, attitudes, beliefs, and practices (KABP) about stroke and its risk factors from individuals of African ancestry in SSA; ii) educate the community about stroke and ways to decrease disabilities and deaths from stroke; and iii) recruit 3000 control research subjects to participate in a case-control stroke study. CE focused on three-pronged activities-constitution and interaction with Community Advisory Board (CABs), Focus Group Discussions (n=27) and community education and outreach programs (n=88). FGDs and outreach programs indicate that knowledge of stroke, as well as risk factors and follow-up evidence-based care is limited and often late. Almost all indicated that genetic testing could help health provider’s better treat stroke and help scientists better understand the causes of stroke. Over 7000 individuals have received education on cardiovascular risk factors and about 5,000 have been screened for cardiovascular risk factors during the outreaches. The CE core within SIREN is a first of its kind public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders in SSA and has implications as a model for assessment in other high stroke risk populations.

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Addressing ethical issues in H3Africa research – the views of research ethics committee members

Cited by 42 publications

References 1 publication

“The keeping is the problem”: A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

“The keeping is the problem”: A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative

Stroke Investigative Research and Education Network: Public Outreach and Engagement

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