H3Africa provides an unprecedented opportunity to study genetic and genomic technologies into research, diagnosis, intervention, and treatment for sickle cell disease (SCD) in Africa. As such, involving a few African Centers already involved in the forefront of Sickle Cell Disease Research in Africa with moderate expertise on psychosocial research (Cameroon), newborn screening (Ghana) or genomics studies (Tanzania) could serves as a reservoir for rigorous examination of a wide range of accompanying ethical, psychosocial, cultural, and policy issues. While there is a moderate amount of speculation and some theoretical/conceptual literature about the perceptions, utility, and impact of genomic research and SCD-related public health strategies in Africa, little empirical data are available. Empirical data from a broad spectrum of stakeholders are essential to the development of effective policies and programs. A major objective of this pilot project is to advance our understanding of the perspectives of researchers, health professionals, and community populations within our collaborative network concerning both genomic research and the public health aspects of SCD. We will employ qualitative research methods to pursue the following specific aims:
Aim 1 : Explore perspectives and attitudes regarding genomic research and its implementation and implications in Cameroon, Ghana and Tanzania.
Aim 2 : Assess perceptions about public health interventions to increase awareness, early detection, and prevention of SCD-related complications. This research is the first phase of a series of longitudinal, mixed method studies exploring individual, family, community, and professional perspectives on genomic research and SCD-related public health interventions. This formative research will help us to define the most effective strategies for: 1) implementing genomic research and addressing the pertinent issues and 2) insuring informed decision-making about and optimal uptake of newborn screening, other public health interventions for SCD, and the related services.

Public Health Relevance

While there is a moderate amount of speculation and some theoretical/conceptual literature about the perceptions, utility, and impact of genomic research and SCD-related public health strategies in Africa, little empirical data are available. Empirical data from a broad spectrum of stakeholders are essential to the development of effective policies and programs. A major objective of this project is to advance our understanding of the perspectives of research scientists, health professionals, SCD patients and community populations within our collaborative network concerning both genomic research and the public health aspects of SCD. We will employ qualitative research methods to pursue the following specific aims: Aim 1: Explore perspectives and attitudes regarding genomic research and its implementation and implications in Cameroon, Ghana, and Tanzania. Aim 2: Assess perceptions about public health interventions to increase awareness, early detection, and prevention of SCD-related complications. This research is the first phase of a series of longitudinal, mixed method studies exploring individual, family, community, and professional perspectives on genomic research and SCD-related public health interventions. This formative research will help us to define the most effective strategies for: 1) implementing genomic research and addressing the pertinent issues and 2) insuring informed decision-making about and optimal uptake of newborn screening, other public health interventions for SCD, and the related services

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project--Cooperative Agreements (U01)
Project #
3U01HG007459-01S1
Application #
8733219
Study Section
Special Emphasis Panel (ZHG1-HGR-P (M2))
Program Officer
Bookman, Ebony B
Project Start
2013-09-20
Project End
2016-07-31
Budget Start
2013-09-20
Budget End
2014-07-31
Support Year
1
Fiscal Year
2013
Total Cost
$150,000
Indirect Cost
$11,111
Name
University of Cape Town
Department
Type
DUNS #
568227214
City
Rondebosch
State
Country
South Africa
Zip Code
7700