Abstract
Objective
This study explored perceptions, preferences and attitudes towards disclosure of genetic
testing results for stroke among stroke-free controls (and their family members) in
the SIREN-SIBS Genomics Study, healthcare providers and policymakers.
Materials and Methods
We conducted a qualitative thematic analysis of key informant interviews with 61 participants
recruited from community advisory boards (30) and health care providers (31) across
seven sites in Nigeria and Ghana.
Results
Major findings illustrate differences in the knowledge of genetic testing with superior
knowledge among health care professionals. Relatives and religious leaders were opined
as the best to receive the disclosure as they would be able to break the news to the
patient in a culturally sensitive manner to reduce the likely resultant emotional
outburst. Poor level of awareness of national guidelines for disclosing genetic results
exist. Key facilitating factors for disclosure are education, enabling environment,
involvement of religious and community leaders, campaigns, and possible treatment
options. Disclosure inhibitors include inadequate information, fear of marital break-up
or family displacement, fear of stigmatization, fear of isolation, religious beliefs,
health worker attitude, and lack of preparedness to accept results.
Conclusions
These necessitate culturally sensitive interventions for continuing education, increased
awareness and sustained engagement to equip all stakeholders in genetic testing disclosure
process.
Keywords
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Article info
Publication history
Published online: January 10, 2023
Accepted:
January 4,
2023
Received in revised form:
December 30,
2022
Received:
September 21,
2022
Identification
DOI: https://doi.org/10.1016/j.jstrokecerebrovasdis.2023.106978
Copyright
© 2023 Elsevier Inc. All rights reserved.
