The H3Africa policy framework: negotiating fairness in genomics

Vries, Jantina de; Tindana, Paulina; Littler, Katherine; Ramsay, Michèle; Rotimi, Charles N.; Abayomi, Akin; Mulder, Nicola; Mayosi, Bongani M.

doi:10.1016/j.tig.2014.11.004

Cited by 70 publications

(67 citation statements)

References 13 publications

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“…Our protocols were included in an analysis of H3Africa Consortium consent documents [66] and we contributed to discussions on promoting fairness for genomic research in an African context [30]. …”

Section: Resultsmentioning

confidence: 99%

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Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study

Ali

Soo

Agongo

et al. 2018

Global Health Action

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152

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There is an alarming tide of cardiovascular and metabolic disease (CMD) sweeping across Africa. This may be a result of an increasingly urbanized lifestyle characterized by the growing consumption of processed and calorie-dense food, combined with physical inactivity and more sedentary behaviour. While the link between lifestyle and public health has been extensively studied in Caucasian and African American populations, few studies have been conducted in Africa. This paper describes the detailed methods for Phase 1 of the AWI-Gen study that were used to capture phenotype data and assess the associated risk factors and end points for CMD in persons over the age of 40 years in sub-Saharan Africa (SSA). We developed a population-based cross-sectional study of disease burden and phenotype in Africans, across six centres in SSA. These centres are in West Africa (Nanoro, Burkina Faso, and Navrongo, Ghana), in East Africa (Nairobi, Kenya) and in South Africa (Agincourt, Dikgale and Soweto). A total of 10,702 individuals between the ages of 40 and 60 years were recruited into the study across the six centres, plus an additional 1021 participants over the age of 60 years from the Agincourt centre. We collected socio-demographic, anthropometric, medical history, diet, physical activity, fat distribution and alcohol/tobacco consumption data from participants. Blood samples were collected for disease-related biomarker assays, and genomic DNA extraction for genome-wide association studies. Urine samples were collected to assess kidney function. The study provides base-line data for the development of a series of cohorts with a second wave of data collection in Phase 2 of the study. These data will provide valuable insights into the genetic and environmental influences on CMD on the African continent.

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Section: Resultsmentioning

confidence: 99%

“…A broad consent process was adopted for the study [29,30] to promote the ethical use of the data and samples for future studies and to protect participants from potential harm. In the rural centres this was preceded by a process of community engagement involving assent from the community leaders.…”

Section: Methodsmentioning

confidence: 99%

Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study

Ali

Soo

Agongo

et al. 2018

Global Health Action

Self Cite

152

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“…[1] Many countries are tightening up the processes required for the export of DNA, and SA is no exception. [2] Our legislation clearly states that all DNA that leaves our shores requires an export permit in order to do so.…”

Section: Preventing Exploitationmentioning

confidence: 99%

Exporting DNA – striking a balance between preventing exploitation and promoting innovation

Pepper

2017

S Afr Med J

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DNA contains the blueprint of life. Variations in the script determine the great diversity that characterises our planet. As the analysis of large datasets derived from DNA reveals the hidden secrets of normal and abnormal structure and function as well as our ancestry, the movement of DNA between research laboratories is becoming commonplace. DNA is a resource that can be used for the benefit or to the detriment of the individuals and communities from which it is derived. But can DNA be treated as a simple commodity? How do we deal with questions such as sovereignty, discrimination and commercialisation? What underlies the current trends in attempting to regulate the movement of DNA? And how can we achieve a balance between preventing exploitation and promoting innovation? This brief overview attempts to contextualise the current landscape in South Africa with regard to the DNA that is destined to leave our shores.

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“…We obtained informed consent in a manner that permitted future DNA testing and data and sample sharing. Patient information and consent were designed to conform to H3Africa guidelines (24). In one center, patient information and consent documents were translated into local languages and videos of this were prepared to help comprehension.…”

Section: Ethical Issuesmentioning

confidence: 99%

Human Heredity and Health (H3) in Africa Kidney Disease Research Network

Osafo

Raji

Burke³

et al. 2015

Clinical Journal of the American Society of Nephrology

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CKD affects an estimated 14% of adults in sub-Saharan Africa, but very little research has been done on the cause, progression, and prevention of CKD there. As part of the Human Heredity and Health in Africa (H3Africa) Consortium, the H3Africa Kidney Disease Research Network was established to study prevalent forms of kidney disease in sub-Saharan Africa and increase the capacity for genetics and genomics research. The study is performing comprehensive phenotypic characterization and analyzing environmental and genetic factors from nine clinical centers in four African countries (Ghana, Nigeria, Ethiopia, and Kenya) over a 5-year period. Approximately 4000 participants with specified kidney disease diagnoses and 4000 control participants will be enrolled in the four African countries. In addition, approximately 50 families with hereditary glomerular disease will be enrolled. The study includes both pediatric and adult participants age <1 to 74 years across a broad spectrum of kidney diseases secondary to hypertension-attributed nephropathy, diabetes, HIV infection, sickle cell disease, biopsy-proven glomerular disease, and CKD of unknown origin. Clinical and demographic data with biospecimens are collected to assess clinical, biochemical, and genetic markers of kidney disease. As of March 2015, a total of 3499 patients and controls have been recruited and 1897 had complete entry data for analysis. Slightly more than half (50.2%) of the cohort is female. Initial quality control of clinical data collection and of biosample and DNA analysis is satisfactory, demonstrating that a clinical research infrastructure can be successfully established in Africa. This study will provide clinical, biochemical, and genotypic data that will greatly increase the understanding of CKD in sub-Saharan Africa.

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The H3Africa policy framework: negotiating fairness in genomics

Cited by 70 publications

References 13 publications

Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study

Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study

Exporting DNA – striking a balance between preventing exploitation and promoting innovation

Human Heredity and Health (H3) in Africa Kidney Disease Research Network

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