Clinical adoption of personalized medicine will be successful only to the extent that diagnostic andtherapeutic interventions based on genetic and genomic information are accepted, valued, and used bypatients, affected family members, and physicians. Our work is based on economic theory where thepremise is that individual persons' preferences about the perceived risks, benefits, and costs of suchinterventions are central to many decisions that they will make about personalized medicine, to the overallutilization 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 andused by patients and physicians. Within the overall Program Project, our goal in the Preferences Project isto provide a foundation for understanding individual values for personalized medicine by using decisionsabout genetic testing for Lynch syndrome as an example. To accomplish our goal, we will use a mixedmethod 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 genomicinterventions and testing that are important to patients' preferences for Lynch syndrome testing and 2) toevaluate 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 byusing focus groups and interviews.
Aim 2 : Quantitatively measure preferences for genetic risk information using stated choice surveywith the specific example of Lynch syndrome screening.
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