让青少年和年轻人参与有关基因组研究结果返回的决定:混合方法纵向临床试验协议的研究协议
Amy A Blumling1, Michelle L McGowan2,3, Cynthia A Prows1
1Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
BMC medical informatics and decision making
|December 19, 2024
概括
这项研究探讨了青少年和年轻人如何决定是否学习他们的遗传信息,探索影响这些选择的因素以及随着时间的推移它们的稳定性.
科学领域:
- 基因组医学是基因组医学.
- 生物伦理学生物伦理学
- 青少年健康 青少年健康
背景情况:
- 从历史上看,为了保护未成年人的未来自主权,不鼓励将预测性遗传结果返回未成年人.
- 最近的指导建议向接受临床测序的未成年人提供二次基因组发现,包括成人发病情况.
- 越来越多地建议让青少年参与学习他们的遗传信息的决策.
研究的目的:
- 检查青少年和年轻人关于学习基因组结果的决策过程.
- 为了比较青少年和年轻成年人队伍及其父母之间的选择.
- 评估学习遗传信息的决策冲突和稳定性.
主要方法:
- 未来基因组查研究,招募青少年 (13-17) 和年轻成年人 (18-21).
- 参与者使用在线工具选择他们希望收到的遗传结果 (成人发病风险,携带者身份).
- 定性访谈探讨决策,家长参与以及收到结果的影响.
主要成果:
- 分析不同年龄组以及参与者与家长之间的选择如何不同.
- 评估不同研究时间点的决策冲突和稳定性.
- 探索接收致病/可能致病和载体结果的影响.
结论:
- 这项研究提供了关于青少年和年轻成年人对基因组结果的决策的经验证据.
- 结果将为吸引年轻人参与基因组研究和临床护理提供最佳实践信息.
- 研究了将临床级遗传研究结果归还给年轻人的伦理影响.
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