TY - JOUR
T1 - Parental perspectives regarding the return of genomic research results in neurodevelopmental disorders in South Africa
T2 - anticipated impact and preferences
AU - on behalf of the NeuroDev study
AU - Diedericks, Angelique
AU - Bruwer, Zandré
AU - Laing, Nakita
AU - Eastman, Emma
AU - De Vries, Jantina
AU - Newton, Charles R.
AU - Abubakar, Amina
AU - Robinson, Elise B.
AU - Donald, Kirsten A.
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024
Y1 - 2024
N2 - Few policies and little research exist regarding the disclosure of genomic results to research participants in Africa. As understanding participant preferences would be pivotal to the success of the feedback process, this study set out to address this issue by engaging with enrolled participants from an ongoing genomics research project on neurodevelopmental disorders with the aim to assess the anticipated impact of receiving pertinent results and explore the preferences for feedback in a South African context. Twelve semi-structured interviews were conducted with 17 parents of children participating in the research study. Transcribed interview data and observational notes were analysed using thematic analysis and framework matrices. Participants linked their own meaning to the impact of receiving a pertinent result and perceived the information as useful for reasons other than only clinical utility. These included closure, improved management of their child’s condition and information regarding recurrence risks. In terms of preferences for feedback, an in-person result delivery session, conducted by a member of the study team or medical professional familiar with their child was preferred. In addition, participants felt a sense of ownership over their blood or their contribution to the research study, finding meaning even in non-pertinent results. These findings provide insight into the type of discussions that may be valuable in enabling the development of best practices and guidelines for the return of individual genetic research results, in a culturally appropriate manner, within South African communities.
AB - Few policies and little research exist regarding the disclosure of genomic results to research participants in Africa. As understanding participant preferences would be pivotal to the success of the feedback process, this study set out to address this issue by engaging with enrolled participants from an ongoing genomics research project on neurodevelopmental disorders with the aim to assess the anticipated impact of receiving pertinent results and explore the preferences for feedback in a South African context. Twelve semi-structured interviews were conducted with 17 parents of children participating in the research study. Transcribed interview data and observational notes were analysed using thematic analysis and framework matrices. Participants linked their own meaning to the impact of receiving a pertinent result and perceived the information as useful for reasons other than only clinical utility. These included closure, improved management of their child’s condition and information regarding recurrence risks. In terms of preferences for feedback, an in-person result delivery session, conducted by a member of the study team or medical professional familiar with their child was preferred. In addition, participants felt a sense of ownership over their blood or their contribution to the research study, finding meaning even in non-pertinent results. These findings provide insight into the type of discussions that may be valuable in enabling the development of best practices and guidelines for the return of individual genetic research results, in a culturally appropriate manner, within South African communities.
KW - Feedback
KW - Genomic results
KW - Neurodevelopmental disorders
KW - Parental perspective
KW - Preferences
KW - Research findings
UR - http://www.scopus.com/inward/record.url?scp=85200407370&partnerID=8YFLogxK
U2 - 10.1007/s12687-024-00723-w
DO - 10.1007/s12687-024-00723-w
M3 - Article
AN - SCOPUS:85200407370
SN - 1868-310X
JO - Journal of Community Genetics
JF - Journal of Community Genetics
ER -