Knowledge and attitudes about genetic counseling in patients at a major hospital in Addis Ababa, Ethiopia

Abstract

Previous work at St. Paul's Hospital Millennium Medical College (SPHMMC) in Addis Ababa, Ethiopia, demonstrated a need for genetic counseling (GC) services, with 4% of pediatric, neonatal intensive care, and prenatal patients identified as having indications for genetic evaluation (Quinonez et al, 2019). The aim of this study was to investigate SPHMMC patients' familiarity with, knowledge of, and attitudes toward GC services. Surveys were adapted from previous work in North America populations (Riesgraf et al, 2015 and Gemmell et al, 2017) and administered to 102 patients, and results were compared to North American populations using Student's t test. 30% of respondents reported at least some familiarity with GC, primarily via the media or healthcare providers. Patients had generally positive attitudes toward GC, reporting they would trust information provided by a genetic counselor and that GC is in line with their values. Knowledge of GC showed similar trends overall when compared to results from North American populations. Our work indicates limited exposure to GC in this population, but generally positive feelings toward GC. Patients' attitudes toward GC were comparable to rural North American populations surveyed using the same tool on most items; however, cultural differences including views on abortions and directiveness of healthcare providers could account for discrepancies and are important considerations when implementing genetic services globally.

The introduction of genetic counseling in Ethiopia: Results of a training workshop and lessons learned

“…A survey of patients showing positive views and preferences of genetic counseling services was conducted and has been published elsewhere [18]. The insights gained from this needs assessment were combined with previously established recommendations of core competences in genetics essential for all health professionals [19].…”

“…Based on appraisal of assessments, participant surveys and trainer observations curriculum modifications were implemented to increase the focus on human genetics medical knowledge and decrease the amount of didactic content covering Western-based genetic counseling principles, including facilitating decision-making, handling patient emotion and delivering bad news. It was felt these principles were the most difficult to grasp by nurses and were more likely to misalign with established Ethiopian cultural norms [18] Trainees were provided with a genetic counseling checklist (S1 Checklist) to review the aspects of a genetic counseling visit but also as a quality assurance/improvement instrument. Additionally, case log sheets were provided so the curriculum workgroup could track how often nurses were providing counseling and the indications for counseling.…”

“…The three topics removed for Cohort 2 were Facilitated Decision-making, Delivering Bad News and Handling Patient Emotion. Though these areas of practice are used regularly in Ethiopia, previous work has shown differences between Western genetic counseling practice and practices in Ethiopia surrounding patient-provider communication, patient autonomy and decision-making especially [24,25]. For example, previous work in Ethiopia showed 40% of all medical decisions in rural Ethiopian patients were made by a woman's husband [26].…”

“…Providers highlighted the need for genetic counseling education to support established prenatal diagnostic services and pediatric providers caring for patients with congenital anomalies and genetic conditions such as clinically diagnosed Trisomy 21, seen frequently in the pediatrics ward [17]. Though genetic counseling is not an established practice in Ethiopia, patients at SPHMMC felt the services provided by a genetic counselor were in line with their values and indicated they would trust delivered information [18].…”

The introduction of clinical genetic testing in Ethiopia: Experiences and lessons learned

“…In sub‐Saharan Africa (SSA) there are multiple examples of the successful initiation of medical genetics services including prenatal genetic services, genetic testing for hearing loss, and Fragile X syndrome in Cameroon and retinoblastoma services in Kenya (Bosch et al, 2014; He et al, 2014; Hill et al, 2015; Kengne Kamga et al, 2020; Wonkam et al, 2011). Our group has begun medical genetics capacity building in Ethiopia including investigation into the appropriateness of prenatal genetic services, the public's perception of genetic counseling services and have utilized a mobile application, the MiGene Family History App, to identify the prevalence of congenital anomalies and genetic disease in Addis Ababa (Brooks et al, 2019; Jacobs et al, 2020; Quinonez et al, 2019).…”