Feeding back of individual genetic results in Botswana: mapping opportunities and challenges.
Feeding back of individual genetic results in Botswana: mapping opportunities and challenges.
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DOI：
10.1186/s12910-023-00912-1
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发表时间：
2023-06-03
影响因子：
2.7
通讯作者：
de Vries, Jantina
中科院分区：
文献类型：
--
作者：
Kasule, Mary;Matshaba, Mogomotsi;Wonkam, Ambroise;de Vries, Jantina
我们探讨了博茨瓦纳利益相关者的意见，参与制定，实施和应用伦理标准，从基因组研究的个人研究结果的回报。这使得能够绘制关于可行动性要求的机会和挑战，这些要求决定是否应该反馈个人基因组研究结果。通过深入访谈，本研究探讨了十六（16）个利益相关者对个人基因组研究结果反馈的程度，性质和时间的看法，包括非洲基因组学研究背景下出现的偶然发现。编码的数据进行了分析，通过分析归纳的迭代过程，以文件和解释的主题。总体而言，受访者认为，可操作的个人基因组结果的反馈是一个重要的成果，可以使参与者受益。然而，一些主题浮出水面，指出博茨瓦纳存在的机遇和挑战，这可能有助于规划对绘制的个人基因组结果的反馈。答复者提到的一些机会包括：善治的存在;民主和人道主义;全民保健制度;国家对科学的承诺;将博茨瓦纳转变为知识型经济的研究和创新;以及可促进可采取行动的适用护理标准。另一方面，背景问题，如要求在认可的实验室中验证基因组研究结果，验证基因组结果的高成本，与护理的联系，以及缺乏基因组科学家和顾问等专家，被认为是返回个人结果的挑战。我们建议，在决定是否返回以及返回哪些基因组结果时，要考虑研究环境中返回结果的可操作性的背景机会和挑战。这可能会避免或尽量减少关于可诉性决定的正义、公平和伤害的道德问题。在线版本包含补充材料，可通过10.1186/s12910-023-00912-1获得。
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. 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. 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. 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. The online version contains supplementary material available at 10.1186/s12910-023-00912-1.
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