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Individual Findings in Genetic Research in Africa (IFGeneRA)

Award Number: U54HG009790
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/20/2017
PERIOD OF PERFORMANCE END DATE: 06/30/2024

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Individual Findings in Genetic Research in Africa (IFGeneRA) - Project Summary - IFGeneRA OVERALL Component The Individual Findings in Genetics Research in Africa (IFGeneRA) H3Africa ELSI Collaborative Centre aims to progressively build an evidence base that forms the basis for context- and country specific development of policies relating to the return of individual genetic research results for African genomic research, and to act as an ethics resource for the H3Africa Consortium. We will a) collect empirical evidence from a wide range of stakeholders in both rural and urban settings in three African countries, b) combine methodologies from genetic counselling, social science, anthropology, bioinformatics, health economics and normative ethical analysis to progressively develop this evidence base, and c) test the wider acceptability and applicability of findings we generate in a continental survey that will be administered to relevant stakeholders throughout Africa. In Project 1, we will retrospectively investigate the effect of a genetic diagnosis on the lives of families affected by Fragile X in rural Cameroon. In that project, we will also explore the relation between traditional and modern genetic knowledge, and develop a video documentary about our study as part of our community engagement activities. In Project 2, we will conduct a prospective study to explore the expectations and preferences for feedback of individual genetic research findings in a cohort of healthy controls and patients involved in genomics research in Gaborone, Botswana and Cape Town, South Africa. The study involves (parents or guardians of) children and adults enrolled in genomics research projects focusing on HIV/AIDS, neurodevelopmental conditions and psychotic disorders. In that project, we will also conduct in-depth interviews with people involved in developing, implementing and applying ethical standards and policies for return of individual study results in genomics research in Botswana and South Africa. We will use drama as a means to discuss ethical aspects of our work with community members involved in our research. In Project 3, we will focus on exploring practical and normative considerations relating to decisions to feedback findings in African Genomics Research. Step 1 will combine methods from medical genetics, bioinformatics and health economics to generate practical insight into the scope of the feedback of findings discussion in Africa. In Step 2 we will conduct a normative ethical analysis of ethics literature describing obligations to (not) feedback individual genetic findings for researchers based in low- and middle income African countries. In Step 3 we will draw on the findings from all stages of the three projects to develop an online continental survey exploring wider approaches to practical and ethical considerations relating to the feedback of individual genetic research results.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = -$123,218 )
2025	2021	UNIVERSITY OF CAPE TOWN	LOVERS WALK	CAPE TOWN				ZAF	Trans-NIH Research Support	000	5	11/1/2024	NON-COMPETING CONTINUATION	-$123,218
														Subtotal = -$123,218

Issue Date FY: 2024 ( Subtotal = $0 )
2024	2021	UNIVERSITY OF CAPE TOWN	LOVERS WALK	CAPE TOWN				ZAF	Trans-NIH Research Support	000	5	4/17/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2023 ( Subtotal = $0 )
2023	2021	UNIVERSITY OF CAPE TOWN	LOVERS WALK	CAPE TOWN				ZAF	Trans-NIH Research Support	000	5	6/7/2023	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $0 )
2022	2021	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH				ZAF	Trans-NIH Research Support	000	5	3/16/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2021 ( Subtotal = $474,862 )
2021	2021	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH				ZAF	Trans-NIH Research Support	000	5	8/5/2021	NON-COMPETING CONTINUATION	$474,862
														Subtotal = $474,862

Issue Date FY: 2020 ( Subtotal = $499,741 )
2020	2020	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH		007700		ZAF	Trans-NIH Research Support	000	4	6/19/2020	NON-COMPETING CONTINUATION	$499,741
														Subtotal = $499,741

Issue Date FY: 2019 ( Subtotal = $499,737 )
2019	2019	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH		007700		ZAF	Human Genome Research	000	3	6/10/2019	NON-COMPETING CONTINUATION	$499,737
														Subtotal = $499,737

Issue Date FY: 2018 ( Subtotal = $499,794 )
2018	2018	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH		007700		ZAF	Human Genome Research	000	2	7/17/2018	NON-COMPETING CONTINUATION	$499,794
														Subtotal = $499,794

Issue Date FY: 2017 ( Subtotal = $499,823 )
2017	2017	UNIVERSITY OF CAPE TOWN	LOVERS WALK	RONDEBOSCH		007700		ZAF	Human Genome Research	000	1	9/20/2017	NEW	$499,823
														Subtotal = $499,823

Grand Total All Awards = $2,350,739

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Individual Findings in Genetic Research in Africa (IFGeneRA)

Award Number: U54HG009790

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/20/2017

PERIOD OF PERFORMANCE END DATE: 06/30/2024

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