Project Overview

Illustration from videos: metaphor visual of the “Library of Medical Information”

V.A.L.U.E.S. stands for “Patient Values and Attitudes about a Library of Knowledge:  Uses of EHRs and Samples in Research.”

 

Precision medicine is an evolving approach to healthcare that gives doctors the ability to provide more effective treatment and prevention to patients. To achieve this goal, precision medicine research involves the use of “next generation biobanks” – integrated repositories that can include patient information, biological samples, and genetic data.

It is essential to gather this information from a diverse cohort that represents the entire population as a whole. The concepts involved in precision medicine research may not be family to everyone. One of the challenges of this project is to explain the various concepts and issues around the creation and use of next generation biobanks. In particular, the VALUES project focused on communicating this information to populations traditionally underrepresented in bioethics research.

The VALUES project investigates the perspectives of African American and non-Hispanic White patients, as well as recent immigrant groups understudied in ELSI research including Hispanic, Chinese, South Asian patients, on next generation biobanks.

Our approach is multi-disciplinary and mixed-methods: