What are people willing to pay for whole-genome sequencing information, and who decides what they receive?
Deborah A MarshallJuan Marcos GonzalezF Reed JohnsonKaren V MacDonaldAmy PughMichael P DouglasKathryn A PhillipsPublished in: Genetics in medicine : official journal of the American College of Medical Genetics (2016)
Most people prefer to decide what WGS results are reported. Despite valuing actionable information more, some respondents perceive that genetic information could negatively impact them. Preference heterogeneity for WGS information should be considered in the development of policies, particularly to integrate patient preferences with personalized medicine and shared decision making.Genet Med 18 12, 1295-1302.