针对成人发病的基于DNA的人口查的负结果:接受者的经验
Felicia Russo1,2, Debanjana Chatterjee1, Natalia DeMaria1
1Division of Nephrology, Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA.
Journal of community genetics
|October 7, 2024
概括
返回负遗传查结果需要明确的沟通. 提供教育材料,如图片,提高了参与者对理解其结果及其影响的信心.
科学领域:
- 基因组学就是基因组学.
- 个性化医疗是个性化的医疗.
- 公共卫生 公共卫生
背景情况:
- 基于DNA的人口查成人发病正在推进个性化医学.
- 对公共卫生计划来说,负面结果的有效返回是至关重要的.
- 了解参与者对负面遗传结果的理解至关重要.
研究的目的:
- 探索成年人的经历,从基于DNA的查的负面结果.
- 评估补充教育材料对结果理解的影响.
- 识别潜在的误解及其对未来遗传测试的影响.
主要方法:
- 调查了一组437名从eMERGE-3项目中获得负面结果的成年人.
- 参与者被随机分配,接受或不接受说明片.
- 调查评估了动机,结果理解和解释结果的信心.
主要成果:
- 许多参与者的动机与查目标不一致,寻求诊断或家庭风险信息.
- 四分之一的参与者对解释他们的负面结果缺乏信心.
- 收到图片的受试者对理解结果的信心更高 (19%对29%缺乏信心).
结论:
- 返回负遗传查结果是复杂的,需要明确的沟通策略.
- 像小幅画这样的教育材料可以提高参与者的理解和信心.
- 误解负面结果可能会导致个人放弃适当的基因测试,需要进一步研究有效的沟通方法.
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