Opportunities and barriers for genetic service delivery in Kenya from a health personnel perspective

Abstract

Genetic counselling and testing are essential health services for the management of heritable diseases. However, in low-and-middle income countries like Kenya, genetic counsellors are not yet a licenced profession, and there is limited availability of and access to genetic testing. This study aimed to uncover opportunities and barriers for genetic service delivery in the Kenyan healthcare system from the perspectives of those who provide genetic testing and/or genetic counselling. Participants included Kenyan health personnel who deliver genetic services. This was a qualitative study that collected data via semi-structured one-on-one interviews and analyzed it using inductive thematic analysis. Participant demographics and characteristics of clinical genetic service provision were collected using a survey and results summarized using descriptive statistics. Themes revealed during analysis were compared to the clinical characteristics of genetic service provision to inform the opportunities and barriers. Fifteen interviews were conducted in total. Thematic analysis indicated that participants believed that the barriers facing genetic service delivery were linked to three themes: (1) education and training, (2) costs, and (3) counselling challenges. The opportunities for genetic service delivery were linked to four themes: (1) demand, (2) education and training, (3) encouraging a multidisciplinary approach to care, and (4) enhancing laboratory infrastructure. These findings are crucial for the development of a national evidence-informed and culturally appropriate model for genetic service delivery. Supplementary Information The online version contains supplementary material available at 10.1007/s12687-021-00532-5.

Feasibility of cancer genetic counselling and screening in Cameroon: perceived benefits and barriers

“…Similarly, most were ready to undergo the test if it was free of charge. This is in line with the challenges found in other African studies of which the cost stood out as one of the most remarkable limitation [ 54 , 55 ]. Most of our participants (85.0%) said they will be ready to discuss the results of their genetic testing with their relatives.…”

“…Difficulty to access testing sites (55.3%), unavailability of tests (38.3%), anticipated anxiety (38.3%) and cultural biases (23.4%) were other remarkable barriers to testing in their study. Zhong et al [ 55 ] equally had similar findings in their study on the opportunities and barriers for genetic service delivery in Kenya. These corroborations may be due to the many similarities in ethnic origins, similar economic challenges and cultural similarities.…”

Clinically actionable secondary findings in 130 triads from sub‐Saharan African families with non‐syndromic orofacial clefts

“…Finally, the shortage of support following the return of testing results, including SFs, remains an issue as it concerns the understanding and utility of these finding in resource‐limited settings. This is evident of limited genetic knowledge and workforce including genetic counsellors who can help patients understand the impact of testing outcomes on their well‐being and that of their families (Abacan et al, 2019 ; Quinonez et al, 2021 ; Zhong et al, 2021 ). The outcome is reduced access to genomic medicine services, further widening the health equity gap in African populations.…”

Navigating the Genetic Frontier for the Integration of Genetic Services into African Healthcare Systems: A scoping review

“…Challenges of implementing genetic services Lack of Disease Awareness and Education [24][25][26][29][30][31] Barriers to Testing [24-26, 29, 31] Recourses Limitations and Access to Services [26][27][28]31] Ethical Dilemmas [24,28,30] Follow-Up and Retention Challenges [27] Opportunities to implementing genetic services Prevention [24-26, 28, 29] Presence of supportive networks [26][27][28]31] Advocacy [26,31] Community engagement [26,28] 4 Discussion…”