CSSD working group Precision Medicine: Ethics, Politics and Culture presents Fairness in Precision Medicine: a talk by Kadija Ferryman from the Data & Society Research Institute.
Precision medicine is a growing field that aims to use 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 government's $215 million dollar Precision Medicine Initiative, as well as industry led efforts to collect and analyze volumes of health data.
The Fairness in Precision Medicine Project aims to move past the rhetorics of promise in precision medicine to critically assess the potential for bias and discrimination in health data collection, sharing, and interpretation. To that end, 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.