博茨瓦纳个人遗传结果的反:绘制机遇和挑战的地图
Mary Kasule1, Mogomotsi Matshaba2,3, Ambroise Wonkam4,5
1Botswana-Baylor Children's Clinical Centre of Excellence, Gaborone, Botswana. marykasule@gmail.com.
BMC medical ethics
|June 3, 2023
概括
返回可操作的个体基因组研究结果可以使参与者受益. 博茨瓦纳的利益相关者发现了诸如良好治理等机遇,以及诸如高的验证成本等挑战,为结果的伦理回报政策提供了信息.
科学领域:
- 基因组研究伦理学
- 生物伦理学生物伦理学
- 公共卫生基因组学
背景情况:
- 返回个体基因组研究结果的伦理标准至关重要.
- 了解博茨瓦纳利益相关者的观点对于政策制定至关重要.
- 可操作性要求影响了基因组发现的反.
研究的目的:
- 探索博茨瓦纳利益相关者的观点,开发,实施和应用道德标准返回个体基因组研究结果.
- 绘制与基因组研究结果反的可操作性要求相关的机遇和挑战.
主要方法:
- 与16个 (16) 个利益相关者进行了深入采访.
- 该研究探讨了对个人基因组研究结果的反的范围,性质和时间的观点,包括偶然发现.
- 用分析诱导来识别和解释主题,分析了编码数据.
主要成果:
- 利益相关者认为对可操作的基因组结果的反是有益的.
- 发现的机遇包括良好的治理,普遍的医疗保健和国家对科学的承诺.
- 挑战包括需要认可的实验室验证,高成本,与护理联系以及基因组专家短缺.
结论:
- 关于返回基因组结果的决定应该考虑可操作性的上下文机会和挑战.
- 这种方法可以帮助尽量减少与正义,公平和伤害有关的伦理问题.
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