Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda
A qualitative study
Bibliographic Data
| ID | 21514841 |
|---|---|
| Authors | Joseph Ochieng (0000-0003-3861-9098, Institute of Medical Ethics, corresponding author), Betty Kwagala (0000-0002-1095-0072, Makerere University), John Barugahare (0000-0001-6420-4756, Makerere University), Marlo Möller (0000-0002-0805-6741, South African Medical Research Council), Keymanthri Moodley (0000-0003-3404-4901, Stellenbosch University) |
| Year | 2024 |
| Volume | 50 |
| Issue | 12 |
| Pages | 829-834 |
| Publication date | 2024-12-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Medical Ethics (JOURNAL) |
| Journal identifiers | ISSN: 0306-6800 • E-ISSN: 1473-4257 |
| Publisher | BMJ (PUBLISHER • GB) |
| DOI | 10.1136/jme-2022-108885 |
| PMID | 38290855 |
| OpenAlex | W4391362575 |
| Language | EN |
| Citations received | 2 |
| References cited | 43 |
BACKGROUND: Genetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The study assessed patients' awareness, experiences and perceptions regarding genetic testing and the return of GGR results in a hypothetical context. METHODS: This cross-sectional study employed a qualitative exploratory approach. Respondents were patients attending the medical outpatient unit of Mulago National Hospital. Three deliberative focus group discussions involving 18 respondents were conducted. Data were analysed through thematic analysis. RESULTS: Three main themes and several subthemes were identified. Most respondents were aware of genetic testing, supportive of GGR and receiving results. However, only a few had undergone genetic testing due to cost constraints. They articulated the need for adequate information and genetic counselling to inform decision-making. Privacy of results was important to respondents while others were willing to share results. CONCLUSION: There was general awareness and support for GGR and the return of results. Stigmatisation emerged as a barrier to disclosure of results for some. Global health inequity impacts access and affordability of genetic testing and counselling in Africa and should be addressed as a matter of social justice
Exploratory research · Focus group · Genetic counseling · Genetic testing · Geography · Medical genetics · Qualitative research · Social science · Sociology · Thematic analysis · Applied Psychology · BRCA gene mutations in cancer · Ethics in Clinical Research · Genomics and Rare Diseases · Medicine · Nursing · Psychology · Social Psychology · Genetics
| Citations per year | 1 |
|---|---|
| Citation span | 2024 - 2026 (3) |
| Highly cited | No |