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.
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