NIH Sep 20, 2013 | U01

Exploring Perspectives of Genomics & Sickle Cell Public Health Interventions

Principal Investigator(s): Wonkam, Ambroise

Institution: University of Cape Town

FOA Number: RFA-RM-12-005

Abstract

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.

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
U01

Project Number:
U01HG007459

Start Date:
Sep 20, 2013

End Date:
Jul 31, 2016

PROJECT TERMS:

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