Project

Fairness in Precision Medicine

Team Members

About this Project

The Fairness in Precision Medicine project aims to identify biases that could emerge in data-driven health care.

“Precision medicine” is a growing field that uses multiple data sources to tailor medical care to individuals. From incorporating genetic information, to using data from electronic medical records, precision medicine has the potential to transform healthcare and medical research. Precision medicine has strong support in multiple sectors, including the U.S. government’s $215 million dollar Precision Medicine Initiative, as well as industry-led efforts to collect and analyze volumes of health data.

Fairness in Precision Medicine at Data & Society moves past the rhetorics of promise in precision medicine to critically assess the potential for bias and discrimination in health data collection, sharing, and interpretation. This project maps the network of stakeholders in precision medicine, including researchers, health care providers, clinicians, and data analysts. The project also identifies vulnerabilities in the ecosystem that could lead to discriminatory outcomes, whether they might emerge as a by-product of implicit and explicit values, data quality, algorithmic models, or organizational decision-making.

We offer a framework for understanding trade-offs involved in precision medicine in order to raise challenges that may trigger conflicting commitments. We hope to articulate salient gaps in order to guide precision medicine initiatives at a critical time in their development.


Support for this research was provided by the Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation.

All Work

  • blog posts
    Points
    After the Cambridge Analytica scandal, can internet data be used ethically for research? Data & Society Postdoctoral Scholar Kadija Ferryman and Elaine O. Nsoesie, PhD from the Institute for Health Metrics and Evaluation re... Read on Points
    April 2018
  • report
    Data & Society
    Fairness in Precision Medicine is the first report to deeply examine the potential for biased and discriminatory outcomes in the emerging field of precision medicine; "the effort to collect, integrate and analyze multiple sources of data in order to develop individualized insights about health and disease." Read more
    February 2018
  • report
    Data & Society
    The Precision Medicine National Actor Map is the first visualization of the three major national precision medicine projects--All of Us Research Program, My Research Legacy, Project Baseline--and the network of institutions connected to them as grantees and sub-grantees. The map was developed for the Fairness in Precision Medicine initiative at Data & Society. Read more
    February 2018
  • report
    Data & Society
    What is Precision Medicine? is a general audience white paper by Dr. Kadija Ferryman and Mikaela Pitcan that introduces and outlines the emerging field of precision medicine; the effort to collect, integrate and analyze multiple sources of data in order to develop individualized insights about health and disease. Read more
    February 2018