Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa: Addressing the Risk of Stigma

2021 ◽  
pp. 199-221
Author(s):  
Andrea C. Palk ◽  
Dan J. Stein
Keyword(s):  
Sub Saharan Africa ◽  
Genomic Research ◽  
Ethical Implications ◽  
Sub Saharan

scholarly journals A qualitative study on aspects of consent for genomic research in communities with low literacy

2020 ◽  
Author(s):  
Daima Athumani Bukini ◽  
Columba Mbekenga ◽  
Siana Nkya ◽  
Lisa Purvis ◽  
Sheryl McCurdy ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Low Literacy ◽  
African Countries ◽  
Genomic Study ◽  
Genomic Studies ◽  
Literacy Level ◽  
Sub Saharan ◽  
Study Participants

Abstract Background: Low literacy of study participants in Sub Saharan Africa has been associated with poor comprehension during consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. Aim: The aim of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Methods: Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Results: Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension. Conclusion: The quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies.

scholarly journals Modelling potential range expansion of an underutilised food security crop in Sub-Saharan Africa

2021 ◽  
Author(s):  
Olef Koch ◽  
Wendawek Abebe Mengesha ◽  
Samuel Pironon ◽  
Pagella Tim ◽  
Ian Ondo ◽  
...  
Keyword(s):  
Food Security ◽  
Range Expansion ◽  
Lake Victoria ◽  
Sub Saharan Africa ◽  
Eastern Africa ◽  
Small Scale ◽  
Potential Range ◽  
Niche Modelling ◽  
Ethical Implications ◽  
Sub Saharan

Abstract Despite substantial growth in global agricultural production, food and nutritional insecurity is rising in Sub-Saharan Africa. Identification of underutilised indigenous crops with useful food security traits may provide part of the solution. Enset (Ensete ventricosum) is a perennial banana relative with cultivation restricted to southwestern Ethiopia, where high productivity and harvest flexibility enables it to provide a starch staple for ~20 million people. An extensive wild distribution suggests that a much larger region may be climatically suitable for cultivation. Here we use ensemble ecological niche modelling to predict the potential range for enset cultivation within southern and eastern Africa. We find contemporary bioclimatic suitability for a 12-fold range expansion, equating to 21.9% of crop land and 28.4% of the population in the region. Integration of crop wild relative diversity, which has broader climate tolerance, could enable a 19-fold expansion, particularly to dryer and warmer regions. Whilst climate change may cause a 37% – 52% reduction in potential range by 2070, large centres of suitability remain in the Ethiopian Highlands, Lake Victoria region and the Drakensberg Range. We combine our bioclimatic assessment with socioeconomic data to identify priority areas with high population density, seasonal food deficits and predominantly small-scale subsistence agriculture, where integrating enset may be particularly feasible and deliver climate resilience. When incorporating the genetic potential of wild populations, enset cultivation might prove feasible for an additional 87.2 - 111.5 million people, 27.7 – 33 million of which are in Ethiopia outside of enset’s current cultivation range. Finally, we consider explanations why enset cultivation has not expanded historically, and ethical implications of expanding previously underutilised species.

scholarly journals ‘It is an entrustment’ : Broad consent for genomic research and biobanks in sub‐Saharan Africa

2017 ◽  
Vol 19 (1) ◽  
pp. 9-17 ◽  
Author(s):  
Paulina Tindana ◽  
Sassy Molyneux ◽  
Susan Bull ◽  
Michael Parker
Keyword(s):  
Sub Saharan Africa ◽  
Genomic Research ◽  
Broad Consent ◽  
Sub Saharan

scholarly journals Sustainable genomic research for food security in sub-Saharan Africa

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Sethlina Naa Dodua Aryee ◽  
Dennis Owusu-Adjei ◽  
Richard Osei-Amponsah ◽  
Benjamin Skinner ◽  
Emmanuel Sowatey ◽  
...  
Keyword(s):  
Food Security ◽  
Value Chain ◽  
Crop Production ◽  
Sustainable Use ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Laboratory Research ◽  
Phenotypic Traits ◽  
Key Stakeholders ◽  
Sub Saharan

AbstractAlthough traditional selective breeding has had a tremendous impact on both livestock and crop production in Africa, this has not kept pace with the high demand for animal and plant products on account of increasing urbanization, improved livelihoods and a rapidly growing human population. These challenges justify the need for more innovative and sustainable ways of improving animal and crop production to meet this demand. Over the last two decades the potential of genomics as a key tool to achieve improvement in desirable phenotypic traits has revolutionized the field of applied animal and plant biology. However, well informed use of such techniques has yet to be fully exploited within the context of local resources and capacity-building. The objective of this review is to highlight the rich agricultural biodiversity of sub-Saharan Africa, the potential of genomics in their sustainable use for food security, the challenges of genomic research and the strategies that can be adopted to overcome them in the implementation of agricultural genomic research in Africa. The lack of state-of-the-art laboratory research facilities, skilled human resources, poor funding and non-availability of scientific research resources, paucity of collaborative links between African researchers and a lack of engagement between key stakeholders in the agricultural value chain were identified as major barriers that affect agricultural genomic research in Africa. Finally, the recommended strategies to overcome these challenges will guide policy-makers, researchers, development partners and key stakeholders in the smooth advancement of sustainable agricultural genomic research for improved food security in Africa.

scholarly journals A qualitative study on consenting approaches for genomic research in communities with low literacy

2019 ◽  
Author(s):  
Daima Athumani Bukini ◽  
Columba Mbekenga ◽  
Siana Nkya ◽  
Lisa Purvis ◽  
Sheryl McCurdy ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Low Literacy ◽  
African Countries ◽  
Genomic Study ◽  
Genomic Studies ◽  
Literacy Level ◽  
Sub Saharan ◽  
Study Participants

Abstract Background: Low literacy of study participants in Sub Saharan Africa has been associated with poor comprehension during consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. Aim: The aim of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Methods: Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Results: Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension. Conclusion: The quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies.

scholarly journals The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa

2021 ◽  
Vol 6 ◽  
pp. 190
Author(s):  
Dorcas Kamuya ◽  
Mary A. Bitta ◽  
Adamu Addissie ◽  
Violet Naanyu ◽  
Andrea Palk ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Research ◽  
Working Group ◽  
Global Mental Health ◽  
Developed Countries ◽  
Global South ◽  
Mental Health Research ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Sub Saharan

The Africa Ethics Working Group (AEWG) is a South-South-North collaboration of bioethics and mental health researchers from sub-Saharan Africa, working to tackle emerging ethical challenges in global mental health research. Initially formed to provide ethical guidance for a neuro-psychiatric genomics research project, AEWG has evolved to address cross cutting ethical issues in mental health research aimed at addressing equity in North-South collaborations. Global South refers to economically developing countries (sub-Saharan Africa in this context) and Global North to economically developed countries (primarily Europe, UK and North America). In this letter we discuss lessons that as a group we have learnt over the last three years; lessons that similar collaborations could draw on. With increasing expertise from Global South as an outcome of several capacity strengthening initiatives, it is expected that the nature of scientific collaborations will shift to a truly equitable partnership. The AEWG provides a model to rethink contributions that each partner could make in these collaborations.

scholarly journals Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?

2018 ◽  
Vol 14 (1) ◽  
pp. 78-87 ◽  
Author(s):  
Olubunmi Ogunrin ◽  
Funmilola Taiwo ◽  
Lucy Frith
Keyword(s):  
Research Ethics ◽  
African Country ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Educational Training ◽  
Ethical Guidance ◽  
Sub Saharan ◽  
Depth Interviews ◽  
Genomic Literacy ◽  
Ethical Oversight

Achieving the objectives of rolling out genomic research programs in sub-Saharan Africa depends on how prepared indigenous biomedical researchers are for this type of research. We explored the level of preparedness of biomedical researchers in a sub-Saharan African country using in-depth interviews to obtain data on their understanding of genomics and genomic research and assess their awareness of the scope of the country’s code of health research ethics. Thirty biomedical researchers were interviewed. Only eight were familiar with concepts of genomics, a form of “genomic health literacy.” The majority were not aware of the country’s code of research ethics. This study showed that generally biomedical researchers were not genomic health literate, unaware of the code and its limitations as a source of ethical guidance for the conduct of genomic research. These findings underscore the need for educational training in genomics and creating awareness of ethical oversight for genomic research in sub-Saharan Africa.

scholarly journals Modelling potential range expansion of an underutilised food security crop in Sub-Saharan Africa

2021 ◽  
Author(s):  
Olef Koch ◽  
Wendawek A. Mengesha ◽  
Samuel Pironon ◽  
Tim Pagella ◽  
Ian Ondo ◽  
...  
Keyword(s):  
Food Security ◽  
Range Expansion ◽  
Lake Victoria ◽  
Sub Saharan Africa ◽  
Eastern Africa ◽  
Small Scale ◽  
Potential Range ◽  
Niche Modelling ◽  
Ethical Implications ◽  
Sub Saharan

Despite substantial growth in global agricultural production, food and nutritional insecurity is rising in Sub-Saharan Africa. Identification of underutilised indigenous crops with useful food security traits may provide part of the solution. Enset (Ensete ventricosum) is a perennial banana relative with cultivation restricted to southwestern Ethiopia, where high productivity and harvest flexibility enables it to provide a starch staple for ~20 million people. An extensive wild distribution suggests that a much larger region may be climatically suitable for cultivation. Here we use ensemble ecological niche modelling to predict the potential range for enset cultivation within southern and eastern Africa. We find contemporary bioclimatic suitability for a 12-fold range expansion, equating to 21.9% of crop land and 28.4% of the population in the region. Integration of crop wild relative diversity, which has broader climate tolerance, could enable a 19-fold expansion, particularly to dryer and warmer regions. Whilst climate change may cause a 37% - 52% reduction in potential range by 2070, large centres of suitability remain in the Ethiopian Highlands, Lake Victoria region and the Drakensberg Range. We combine our bioclimatic assessment with socioeconomic data to identify priority areas with high population density, seasonal food deficits and predominantly small-scale subsistence agriculture, where integrating enset may be particularly feasible and deliver climate resilience. When incorporating the genetic potential of wild populations, enset cultivation might prove feasible for an additional 87.2 - 111.5 million people, 27.7 - 33 million of which are in Ethiopia outside of enset's current cultivation range. Finally, we consider explanations why enset cultivation has not expanded historically, and ethical implications of expanding previously underutilised species.

Ennobling the Neanderthal: Racialized Texts and Genomic Admixture

2018 ◽  
Vol 5 (1) ◽  
Author(s):  
James Doucet-Battle
Keyword(s):  
Racial Difference ◽  
Genomic Medicine ◽  
Sub Saharan Africa ◽  
Genomic Research ◽  
Human Populations ◽  
Homogeneous Groups ◽  
Increased Risk ◽  
New Findings ◽  
Sub Saharan ◽  
Evolutionary Narratives

I am interested in the ways that new discoveries and subsequent claims about Neanderthal genetic inheritance invert previous evolutionary narratives. Whereas Neanderthals were once viewed as a brutish and maladaptive discontinuity from the human story, today’s genomic research confirms that at least 5 percent of Neanderthal DNA survives in contemporary human populations. In fact, scientists are now asking whether any Neanderthal retentions might favor human populations. On the heels of this research, new findings from the Slim Initiative for Genomic Medicine in the Americas (SIGMA) seek to link Neanderthal retentions to an increased risk of developing type 2 diabetes (T2D). As human populations migrated out of and away from sub-Saharan Africa, they became more similar to one another as well as to their “sister” Neanderthal and Denisovan ancestors. Because of the decrease in genetic mutations arising from the resultant loss of heterozygosity, these relatively more homogeneous groups of “archaic humans” became less related to sub-Saharan Africans. My concern centers on how the absence of Neanderthal ancestry in sub-Saharan populations and the claims of the SIGMA group offer new narrative texts for reading racial difference and T2D risk in Indigenous, Black, and Mexican populations. I argue that these novel texts form the latest in a line of historical schemata for reckoning racial difference, specifically in Mexico.

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