Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
Abstract Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2023-06-01
|
| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-023-00912-1 |
| _version_ | 1797811327916310528 |
|---|---|
| author | Mary Kasule Mogomotsi Matshaba Ambroise Wonkam Jantina de Vries |
| author_facet | Mary Kasule Mogomotsi Matshaba Ambroise Wonkam Jantina de Vries |
| author_sort | Mary Kasule |
| collection | DOAJ |
| description | Abstract Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. Methods Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of African genomics research. Coded data was analyzed through an iterative process of analytic induction to document and interpret themes. Results Overall, respondents were of the view that feedback of actionable individual genomic results was an important outcome that could benefit participants. However, a number of themes surfaced that pointed to opportunities and challenges that exist in Botswana that could help in planning for feeding back of individual genomic results that were mapped. Some of the opportunities cited by the respondents included the existence of good governance; democracy and humanitarianism; universal healthcare system; national commitment to science; research and innovation to transform Botswana into a knowledge-based economy; and applicable standard of care which could promote actionability. On the other hand, contextual issues like the requirement for validation of genomic research results in accredited laboratories, high cost of validation of genomic results, and linkage to care, as well as lack of experts like genomic scientists and counselors were considered as challenges for return of individual results. Conclusion We propose that decisions whether and which genomic results to return take into consideration contextual opportunities and challenges for actionability for return of results in a research setting. This is likely to avoid or minimize ethical issues of justice, equity and harm regarding actionability decisions. |
| first_indexed | 2024-03-13T07:21:01Z |
| format | Article |
| id | doaj.art-3fcc201483944e22866de0e976523ab8 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-03-13T07:21:01Z |
| publishDate | 2023-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-3fcc201483944e22866de0e976523ab82023-06-04T11:37:55ZengBMCBMC Medical Ethics1472-69392023-06-0124111010.1186/s12910-023-00912-1Feeding back of individual genetic results in Botswana: mapping opportunities and challengesMary Kasule0Mogomotsi Matshaba1Ambroise Wonkam2Jantina de Vries3Botswana-Baylor Children’s Clinical Centre of ExcellenceBotswana-Baylor Children’s Clinical Centre of ExcellenceDeputy Dean’s Office, Faculty of Health Sciences and Groote SchuurDepartment of Medicine and NeuroScience Institute , The Ethics LabAbstract Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. Methods Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of African genomics research. Coded data was analyzed through an iterative process of analytic induction to document and interpret themes. Results Overall, respondents were of the view that feedback of actionable individual genomic results was an important outcome that could benefit participants. However, a number of themes surfaced that pointed to opportunities and challenges that exist in Botswana that could help in planning for feeding back of individual genomic results that were mapped. Some of the opportunities cited by the respondents included the existence of good governance; democracy and humanitarianism; universal healthcare system; national commitment to science; research and innovation to transform Botswana into a knowledge-based economy; and applicable standard of care which could promote actionability. On the other hand, contextual issues like the requirement for validation of genomic research results in accredited laboratories, high cost of validation of genomic results, and linkage to care, as well as lack of experts like genomic scientists and counselors were considered as challenges for return of individual results. Conclusion We propose that decisions whether and which genomic results to return take into consideration contextual opportunities and challenges for actionability for return of results in a research setting. This is likely to avoid or minimize ethical issues of justice, equity and harm regarding actionability decisions.https://doi.org/10.1186/s12910-023-00912-1OpportunitiesChallengesRegulatory oversightActionabilityResourcesCost |
| spellingShingle | Mary Kasule Mogomotsi Matshaba Ambroise Wonkam Jantina de Vries Feeding back of individual genetic results in Botswana: mapping opportunities and challenges BMC Medical Ethics Opportunities Challenges Regulatory oversight Actionability Resources Cost |
| title | Feeding back of individual genetic results in Botswana: mapping opportunities and challenges |
| title_full | Feeding back of individual genetic results in Botswana: mapping opportunities and challenges |
| title_fullStr | Feeding back of individual genetic results in Botswana: mapping opportunities and challenges |
| title_full_unstemmed | Feeding back of individual genetic results in Botswana: mapping opportunities and challenges |
| title_short | Feeding back of individual genetic results in Botswana: mapping opportunities and challenges |
| title_sort | feeding back of individual genetic results in botswana mapping opportunities and challenges |
| topic | Opportunities Challenges Regulatory oversight Actionability Resources Cost |
| url | https://doi.org/10.1186/s12910-023-00912-1 |
| work_keys_str_mv | AT marykasule feedingbackofindividualgeneticresultsinbotswanamappingopportunitiesandchallenges AT mogomotsimatshaba feedingbackofindividualgeneticresultsinbotswanamappingopportunitiesandchallenges AT ambroisewonkam feedingbackofindividualgeneticresultsinbotswanamappingopportunitiesandchallenges AT jantinadevries feedingbackofindividualgeneticresultsinbotswanamappingopportunitiesandchallenges |