Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.

Background: There is a growing interest in stroke genomics and neurobiobanking research in Africa. These raise several ethical issues, such as consent, re-use, data sharing, storage, and incidental result of biological samples. Despite the availability of ethical guidelines developed for research in Africa, there is paucity of information on how the research participants' perspectives could guide the research community on ethical issues in stroke genomics and neurobiobanking research. To explore African research participants' perspectives on these issues, a study was conducted at existing Stroke Investigation Research and Education Network (SIREN) sites in Nigeria and Ghana. Method: Using an exploratory design, twenty-eight Focus Group Discussions (FGDs) sessions were conducted with stroke survivors (n=7), caregivers(n=7), stroke - free controls(n=7), and Community Advisory Board members(n=7). Data were collected using an interview guide. Interviews were conducted in English and indigenous languages of the community, audio recorded, and transcribed verbatim. Data were analyzed using NVivo (March, 2020) Software. Result: Results revealed that stroke genomics and neurobiobanking research in Africa require researchers' direct attention to ethical issues. Concerns were raised about understanding, disclosure and absence of coercion as components of true autonomous decision making in research participation. Participants argued that the risk and benefits attached to participation should be disclosed at the time of recruitment. Fears around data sharing were voiced as adherence to the principle of privacy and confidentiality were of paramount importance to participants. The preference was to receive the results of incidental findings with no stigma attached from society. Conclusion: Research participants' perspectives are a vital aspect of community engagement in stroke genomics and neurobiobanking research. Findings from this study suggest that research participants are interested in these fields of research in Africa if their concerns about ethical issues are appropriately addressed within the research framework.

COVID-19-related risk perception, anxiety and protective behaviours among Nigerian adults: a cross-sectional study.

Background: Pandemics such as the current COVID-19 pandemic are often associated with heightened fear and significant adjustments in health behaviours. Aim: This study aimed to assess perceived risk, anxiety and protective behaviours of the general public during the early phase of the coronavirus disease (COVID-19) pandemic in Nigeria. Methods: An online cross-sectional study among 1197 respondents aged 18 years and above between 27 April to 16 May 2020. Result: More than half (61.9%) of the respondents had high risk perception towards COVID-19, and high anxiety level was found in 37.2%. Male gender, being a Christian, having more than 12 years of formal education and high risk perception were positively associated with observance of more than one protective measure against COVID-19. The predictors of COVID-19-related anxiety were high risk perception and being a Muslim. Conclusions: This study showed that risk perception has an influence on both anxiety and observance of protective behaviours. Being a novel experience, this research has implications to support current and future responses to a pandemic experience.

Capacity-Building for Stroke Genomic Research Data Collection: The African Neurobiobank Ethical, Legal, and Social Implications Project Experience.

Background: The fields of stroke genomics, biobanking, and precision medicine are rapidly expanding in sub-Saharan Africa. However, the ethical, legal, and social implications (ELSI) of emerging neurobiobanking and genomic data resources are unclear in an emerging African scientific landscape with unique cultural, linguistic, and belief systems. Objective: This article documents capacity-building experiences of researchers during the development, pretesting, and validation of data collection instruments of the African Neurobiobank for Precision Stroke Medicine-(ELSI) Project. Methods: The African Neurobiobank for Precision Stroke Medicine-ELSI project is a transnational, multicenter project implemented across seven sites in Ghana and Nigeria. Guided by the Community-Based Participatory Research framework, we conducted three workshops with key stakeholders to review the study protocol, ensure uniformity in implementation; pretest, harmonize, and integrate context-specific feedback to ensure validity and adaptability of data collection instruments. Workshop impact was assessed using an open-ended questionnaire, which included questions on experience with participation in any of the workshops, building capacity in Genetic and Genomic Research (GGR), level of preparedness toward GGR, the genomic mini-dictionary developed by the team, and its impact in enhancing understanding in GGR. Data were analyzed qualitatively using a thematic framework approach. Results: Findings revealed the usefulness of the workshop in improving participants' knowledge and capacity toward GGR implementation. It further identified local, context-specific concerns regarding quality data collection, the need to develop culturally acceptable, genomic/biobanking data collection tools, and a mini-dictionary. Participants-reported perceptions were that the mini-dictionary enhanced understanding, participation, and data collection in GGR. Overall, participants reported increased preparedness and interest in participating in GGR. Conclusion: Capacity-building is a necessary step toward ELSI-related genomic research implementation in African countries where scholarship of ELSI of genomics research is emerging. Our findings may be useful to the design and implementation of ELSI-GGR projects in other African countries.

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

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.

A framework for the promotion of ethical benefit sharing in health research.

There is an increasing recognition of the importance of including benefit sharing in research programmes in order to ensure equitable and just distribution of the benefits arising from research. Whilst there are global efforts to promote benefit sharing when using non-human biological resources, benefit sharing plans and implementation do not yet feature prominently in research programmes, funding applications or requirements by ethics review boards. Whilst many research stakeholders may agree with the concept of benefit sharing, it can be difficult to operationalise benefit sharing within research programmes. We present a framework designed to assist with identifying benefit sharing opportunities in research programmes. The framework has two dimensions: the first represents microlevel, mesolevel and macrolevel stakeholders as defined using a socioecological model; and the second identifies nine different types of benefit sharing that might be achieved during a research programme. We provide an example matrix identifying different types of benefit sharing that might be undertaken during genomics research, and present a case study evaluating benefit sharing in Africa during the SARS-CoV-2 pandemic. This framework, with examples, is intended as a practical tool to assist research stakeholders with identifying opportunities for benefit sharing, and inculcating intentional benefit sharing in their research programmes from inception.

Religious coping in the time of COVID-19 Pandemic in India and Nigeria: Finding of a cross-national community survey.

BACKGROUND: Religious and spiritual coping strategies is one of the possible tools that can be used to deal with stress and the negative consequences of life problems and illnesses. The study aims to assess religious coping in the time of the COVID-19 pandemic. METHODOLOGY: It was an online survey. The sample was collected using a snowball sampling technique as the data were collected through Google forms. The survey started on 22 April 2020 and was closed on 28 May 2020. The participants were from two countries, India and Nigeria. The inclusion criteria were age between 18 and 60 years, having completed at least 10 years of formal education, and have internet access. For data collection, Semi-structured proforma (demographic and personal characteristics) and Brief RCOPE was used to see the extent to which individuals engage in positive and negative forms of religious coping. RESULTS: A total of 647 individuals (360 from Nigeria and 287 from India) participated in the survey. A total of 188 (65.5%) participants in India reported no change in their religious activities since they heard about COVID-19, while, 160 (44.4%) in Nigeria reported a decrease in religious activities. Positive religious coping in the Nigerian population was significantly higher than the Indian population. Similarly, negative religious coping was significantly higher (for most of the items in the brief RCOPE) in the Indian population than the Nigerian population. CONCLUSION: Significant percentages of people after the COVID-19 pandemic took religious coping steps to overcome their problems. During this pandemic, positive religious coping among the Indian and Nigerian communities is more prevalent than negative religious coping. There is a substantial cross-national difference between Indians and Nigerians in the religious coping modes.

Gender and educational attainment influence willingness to donate organs among older Nigerians: a questionnaire survey.

INTRODUCTION: disparity between the demand for and the supply of organs for transplantation remains a major public health issue of global concern. This study evaluated the knowledge and determinants of willingness to donate organs among outpatient clinic attendees in a Nigerian teaching hospital. METHODS: a 43-item semi-structured interviewer-administered questionnaire was designed to assess awareness and willingness of individuals attending Neurology, Psychiatry and Geriatrics Outpatient clinics to donate bodily organs for transplantation. Association between participants' characteristics and willingness towards organ donation was investigated using logistic regression models. RESULTS: a total of 412 participants were interviewed and mean age was 46.3 (16.1) years. There were 229 (55.6%) females and 92.5% had at least 6 years of formal education. Overall, 330 (80.1%) were aware of donation of at least one organ for transplantation purposes but only 139 (33.7%) were willing to donate organ. In analyses, adjusting for sex, marital status, family setting and educational status, male gender AOR [2.066(1.331-3.2016)] secondary education [AOR 5.57 (1.205-25.729) p= 0.028] and post-secondary education [AOR-6.98 (1.537-31.702) p= 0.012 were independently associated with willingness towards organ donation. CONCLUSION: the survey revealed high level of awareness but poor willingness towards organ donation among older Nigerians attending outpatient clinics of a premier tertiary hospital. Male gender and educational attainment were significantly associated with willingness to donate. Educational programs that particularly target women and less educated older Nigerians are needed to promote organ donation in 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.

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.