Both studies will increase our knowledge of how to tailor informed consents and educational materials based on linguistic and cultural needs so that genomic concepts are better understood.
—Ebony Madden, PhD
Two grants totaling more than $300,000 will support studies on genomic literacy among Africans as it relates to research conducted in Africa by African investigators. The 3-year grants are part of the Human Heredity and Health in Africa (H3Africa) program, funded by the National Institutes of Health’s Common Fund in partnership with Britain’s Wellcome Trust.
One of the grants will support a research project to understand cultural and language concepts of genomics in Nigeria. The goal is to develop a participant consent form for a diabetes study that better relays genetic concepts in terms that people from both rural and urban environments in Nigeria understand. The other grant will support a project to determine Ethiopians’ understanding of gene-environment interactions, with a goal of also increasing awareness about disease susceptibility.
Both grants are part of the Ethical, Legal and Social Implications (ELSI) component of H3Africa. The program has disbursed approximately $78 million to date.
“These grants will help us begin to get a better sense of what people in two different African countries understand about genomics concepts,” said H3Africa Program Director Ebony Madden, PhD, an Epidemiologist in the Division of Genomic Medicine at the National Human Genome Research Institute (NHGRI), part of NIH. “We hope that what we learn from this work will lead to more effective informed consent discussions with potential research participants and to new culturally appropriate educational strategies about genomics.”
Institute of Human Virology, Nigeria
The Institute of Human Virology, Nigeria, has been awarded a grant of $162,000, with Clement Adebayo Adebamowo, MD, ScD, serving as Principal Investigator. Dr. Adebamowo and his colleagues will conduct interviews with community leaders and focus groups in rural and urban populations to gauge how concepts on heritability and genomics are understood in local languages. They will assess the participants’ perception and satisfaction with the informed consent form currently in use, and compare it to a new consent form the researchers will develop. The new form will include language that they hope will better explain genomics terms based on feedback they receive from the interviews and focus groups. The researchers plan to test this on participants enrolling in a diabetes study. The Nigeria project could impact how consent forms for genomics-related projects are written, especially for populations unfamiliar with the concepts of heritability and genomics.
Addis Ababa University, Ethiopia
Addis Ababa University, Ethiopia, has been awarded a grant of $161,151, with Getnet Tadele, PhD, serving as Principal Investigator. Dr. Tadele and his colleagues are assessing young people’s (ages 15 to 24 years) understanding of how genes and the environment interact to cause podoconiosis, an infectious condition prevalent in northern Ethiopia. The disease is caused when people with certain genetic variants are exposed to volcanic soil. An estimated one-fifth of Ethiopians carry the genetic variants that result in the debilitating disease. Researchers will then develop educational strategies and a resource to improve the understanding of these concepts in African communities.
Dr. Madden said both research projects could lead to broader applications.
“Both studies will increase our knowledge of how to tailor informed consents and educational materials based on linguistic and cultural needs so that genomic concepts are better understood,” Dr. Madden said. “Many times, even though we try to write on a young elementary school student level, we are still using terms that certain cultures may not be able to relate to. These studies will teach us how to truly inform participants and/or educate the public about genetic concepts that they may only have a vague idea about.” ■
Disclosure: These awards are supported by NIH grants 1U01HG007654-01 and 1U01HG007628-01.