In January 2015, President Obama launched the Precision Medicine Initiative (PMI), an ambitious research effort designed to usher in an era of tailored approaches to revolutionize how we treat disease and improve health. PMI seeks to improve health outcomes by fueling the development of new treatments and catalyzing new data-based and more precise medical treatments. It will do this by engaging at least one million Americans to contribute their health data, which will enable scientists to accelerate biomedical discoveries by leveraging advances in genomics, while employing emerging methods for managing and analyzing large data sets as they protect the contributors’ privacy and health information. Understanding the views and values of the public is critical to designing the study so that it will best meet the participants’ needs and most appropriately address their concerns. To help facilitate this understanding, the FNIH conducted a national survey to understand the public’s views about the cohort and the factors that would influence their participation, and shared the results with the NIH.
As part of the federal PMI, the NIH is leading the effort to build a national, large-scale Research enterprise, known as the All of Us Research Program, with one million or more volunteers to extend precision medicine to all diseases.
This project was completed in 2015.
- Conduct a national survey to understand the public’s views about donating their health data to the Precision Medicine Initiative and the factors that would influence their participation.
- Share the results of the survey with NIH so that they may design the study to best meet participants’ needs and most appropriately address their concerns.