Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
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Date
2020
Journal Title
Journal ISSN
Volume Title
Publisher
Global Bioethics
Abstract
The use of broad consent for genomics research raises important
ethical questions for the conduct of genomics research, including
relating to its acceptability to research participants and
comprehension of difficult scientific concepts. To explore these
and other challenges, we conducted a study using qualitative
methods with participants enrolled in an H3Africa Rheumatic
Heart Disease genomics study (the RHDGen network) in Zambia to
explore their views on broad consent, sample and data sharing
and secondary use. In-depth interviews were conducted with
RHDGen participants (n = 18), study staff (n = 5) and with
individuals who refused to participate (n = 3). In general, broad
consent was seen to be reasonable if reasons for storing the
samples for future research use were disclosed. Some felt that
broad consent should be restricted by specifying planned future
studies and that secondary research should ideally relate to
original disease for which samples were collected. A few
participants felt that broad consent would delay the return of
research results to participants. This study echoes findings in
other similar studies in other parts of the continent that
suggested that broad consent could be an acceptable consent
model in Africa if careful thought is given to restrictions on re-use.
Description
Keywords
H3Africa, Broad consent, Genomics, Bio-banking
Citation
Oliver Mweemba, John Musuku, Bongani M. Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana & Jantina De Vries (2020) Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia, Global Bioethics, 31:1, 184-199, DOI: 10.1080/11287462.2019.1592868