Deliberation to Promote Shared Sovereignty in Health Research: Four Questions to Clarify Goals, Methods, and Scope

Vries, Jantina de; Munung, Nchangwi Syntia; Tindana, Paulina

doi:10.1080/15265161.2016.1214326

Cited by 3 publications

(2 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…With the huge human genomic diversity, coupled with an ageing population and associated brain disorders, the Ibadan Brain Ageing, Dementia And Neurodegeneration (IBADAN) Brain Bank [ 2 ], the first organized brain tissue biorepository in sub-Saharan Africa (sSA), was set up to accrue, process and store unique brain tissues for future research into a broad spectrum of neurological disorders such as stroke and dementias. Future discoveries emanating from these resources and systems have an immeasurable potential health benefit to people of African ancestry and other ancestral populations [ 3 ]. Despite these groundbreaking advancements in genomic research within the African research context, several questions related to the ethical, legal and social aspects of neurobiobanking remain unanswered.…”

Section: Introductionmentioning

confidence: 99%

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

et al. 2022

View full text Add to dashboard Cite

Introduction Genomic research and neurobiobanking are expanding globally. Empirical evidence on the level of awareness and willingness to donate/share biological samples towards the expansion of neurobiobanking in sub-Saharan Africa is lacking. Aims To ascertain the awareness, perspectives and predictors regarding biological sample donation, sharing and informed consent preferences among community members in Ghana and Nigeria. Methods A questionnaire cross-sectional survey was conducted among randomly selected community members from seven communities in Ghana and Nigeria. Results Of the 1015 respondents with mean age 39.3 years (SD 19.5), about a third had heard of blood donation (37.2%, M: 42.4%, F: 32.0%, p = 0.001) and a quarter were aware of blood sample storage for research (24.5%; M: 29.7%, F: 19.4%, p = 0.151). Two out of ten were willing to donate brain after death (18.8%, M: 22.6%, F: 15.0%, p<0.001). Main reasons for unwillingness to donate brain were; to go back to God complete (46.6%) and lack of knowledge related to brain donation (32.7%). Only a third of the participants were aware of informed consent (31.7%; M: 35.9%, F: 27.5%, p<0.001). Predictors of positive attitude towards biobanking and informed consent were being married, tertiary level education, student status, and belonging to select ethnic groups. Conclusion There is a greater need for research attention in the area of brain banking and informed consent. Improved context-sensitive public education on neurobiobanking and informed consent, in line with the sociocultural diversities, is recommended within the African sub region.

show abstract

Section: Introductionmentioning

confidence: 99%

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

et al. 2022

View full text Add to dashboard Cite

show abstract

“…Genomic and biobanking-based research is increasingly being conducted in the context of collaborations between researchers in high-income countries and those in low-and middle-income countries (LMICs) (Munung et al, 2017). Although African researchers now have unique opportunities to contribute to cutting-edge stroke genomic research, existing ethical, legal, and regulatory frameworks have also been challenged (de Vries et al, 2016(de Vries et al, , 2017. Gaps exist in the key ELSI elements of biobanking, including informed consent (broad, blanket, restricted, and tiered), respect, trust building, privacy, confidentiality, sample reuse and sharing, feedback of results, community engagement (CE), governance, and capacity strengthening related to neurobiobanking and stroke genomics research in SSA.…”

Section: Scientific Gaps In the Elsi Of Neurobiobanking And Stroke Genomics In Africamentioning

confidence: 99%

Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project

Akinyemi

Jenkins

Nichols

et al. 2020

International Journal of Qualitative Methods

View full text Add to dashboard Cite

The ethical, legal, and social implications (ELSI) of emerging neurobiobanks and data resources are unclear in an African scientific landscape with unique cultural, linguistic, and belief systems. The overarching goal of the African Neurobiobank for Precision Stroke Medicine–—ELSI Project is to identify, examine, and develop novel approaches to address ELSI issues of biobanking and stroke genomic research in sub-Saharan Africa (SSA). To accomplish the goal we will (1) explore knowledge, attitude, perceptions, barriers, and facilitators influencing ELSI issues related to biobanking and stroke genomic research; (2) use information obtained to craft a community intervention program focused on ELSI issues; and (3) build capacity and careers related to genomics and biobanking for effective client/community engagement while enhancing regulatory, governance, and implementation competences in biobanking science in SSA. A community-based participatory research and mixed-methodological approach, focused on various levels of the social ecological model, will be used to identify and examine relevant ELSI issues. Contextual intervention tools, platforms, and practices will be developed to enhance community understanding and participation in stroke biobanking and genomics research activities while facilitating enduring trust, and equitable and fair utilization of biobanking resources for genetic and trans-omics research. A concurrent capacity building program related to genetic counseling and biobanking will be implemented for early career researchers. The huge potential for neurobiobanking and genomics research in Africa to advance precision medicine applicable to stroke and other neurological disorders requires addressing ELSI challenges while building sustainable research, career, and regulatory capacities in trans-omics and biobanking science.

show abstract

Response to Open Peer Commentaries on “Governance of Transnational Global Health Research Consortia and Health Equity”

Pratt

Hyder

2016

The American Journal of Bioethics

View full text Add to dashboard Cite

Deliberation to Promote Shared Sovereignty in Health Research: Four Questions to Clarify Goals, Methods, and Scope

Cited by 3 publications

References 10 publications

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project

Response to Open Peer Commentaries on “Governance of Transnational Global Health Research Consortia and Health Equity”

Contact Info

Product

Resources

About