我们所有人参与者对研究价值回报的观点
Jennifer Richmond1, Jennifer Cunningham-Erves2, Benjamin Givens3
1Division of Public Health Sciences, Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston-Salem, NC.
概括
大多数参与者重视遗传疾病风险信息. 然而,对于特定的研究结果和获得医疗保健提供者的偏好在不同社会人口群体之间有很大差异.
科学领域:
- 基因组学就是基因组学.
- 医疗保健服务研究 医疗服务研究
- 社会学 社会学 社会学
背景情况:
- 了解参与者对研究信息的偏好对于有效返回结果至关重要.
- 社会人口统计学因素可能会影响这些偏好和获得医疗保健支持.
研究的目的:
- 为了确定参与者对特定研究信息类型的偏好.
- 调查社会人口统计学群体之间信息偏好的变化.
- 识别可用于理解返回的研究信息的医疗保健提供者.
主要方法:
- 在"我们所有人"研究计划中,调查了20405名不同参与者的数据.
- 分层抽样以确保代表性.
- 权重多变量后勤回归用于分析信息价值,提供者访问和社会人口统计之间的关联.
主要成果:
- 78.6%的参与者重视有关可用治疗的严重遗传疾病风险的信息.
- 初级保健医生,专家和遗传咨询师是最容易获得的提供者.
- 在社会人口统计学群体中观察到信息偏好和提供者访问的显著差异,较高的收入与对遗传风险信息的价值增加相关.
结论:
- 参与者高度重视遗传信息.
- 对于研究信息类型的具体偏好在社会人口统计学群体之间有所不同.
- 调整研究结果回报策略以适应不同人群是必不可少的.
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