PREFERENCES FOR PERSONALIZED MEDICINE USING GENOMICS

个人化药物的临床应用只有在以下情况下才能成功： 基于遗传和基因组信息的治疗干预被接受、重视和使用 患者、受影响的家属和医生。我们的工作建立在经济理论的基础上， 前提是个人对这样的风险、收益和成本的偏好 干预措施是他们将做出的关于个性化医疗的许多决策的核心，对整体而言 个性化药物的使用，以及其对社会的成本和收益。 关于基因检测提供的信息是否以及如何被重视以及如何评价，人们知之甚少 供病人和医生使用。在整个计划项目中，我们在首选项项目中的目标是 通过使用决策为理解个性化医疗的个人价值提供基础 以林奇综合征的基因检测为例。为了实现我们的目标，我们将使用混合的 方法结合了一系列递增的定性和定量研究。 我们的目标是：1)发展对遗传和基因组特征的理解 对患者对林奇综合征测试的偏好很重要的干预和测试以及2) 在基于人群的大样本中评估遗传风险信息的偏好。具体目标是： 目标1：通过以下方式定性检查对遗传风险信息和个性化药物的偏好 使用焦点小组和访谈。 目标2：使用陈述的选择调查来定量衡量对遗传风险信息的偏好 结合林奇综合征筛查的具体例子。

Clinical adoption of personalized medicine will be successful only to the extent that diagnostic and therapeutic interventions based on genetic and genomic information are accepted, valued, and used by patients, affected family members, and physicians. Our work is based on economic theory where the premise is that individual persons' preferences about the perceived risks, benefits, and costs of such interventions are central to many decisions that they will make about personalized medicine, to the overall utilization of personalized medicine, and to its costs and benefits to society. Little is known about whether and how the information provided by genetic testing will be valued and used by patients and physicians. Within the overall Program Project, our goal in the Preferences Project is to provide a foundation for understanding individual values for personalized medicine by using decisions about genetic testing for Lynch syndrome as an example. To accomplish our goal, we will use a mixed method approach that incorporates a series of incremental qualitative and quantitative studies. Our objectives are 1) to develop an understanding of the characteristics of genetic and genomic interventions and testing that are important to patients' preferences for Lynch syndrome testing and 2) to evaluate preferences for genetic risk information in a large population-based sample. Specific Aims are to: Aim 1: Qualitatively examine preferences for genetic risk information and personalized medicine by using focus groups and interviews. Aim 2: Quantitatively measure preferences for genetic risk information using stated choice survey with the specific example of Lynch syndrome screening.