The Evolution of Data Ethics in Clinical Research and Drug Development

Author: Melissa Heidelberg

Publisher: Ethics, Medicine and Public Health

Publication Year: 2020

Summary: The following article discusses how the usage of advanced analytic techniques has revolutionized countless industries, and the clinical research and drug development industry is no exception. Of course, with the application of new techniques comes new problems; of particular concern is whether or not research subject data will affect subjects’ access to healthcare in the future, if the data will be used to develop drugs that subjects cannot personally afford, or whether existing subject data will be analyzed in a way that exacerbates existing social inequities. The data in question is Real World Data (RWD); biometrics gathered by healthcare professionals, smart devices, and applications, which has transformed the way that analysts examine patient health. Heidelberg makes several key recommendations to healthcare data analysts to promote proper data stewardship: data recipients must be responsible for ensuring they are sourcing their data from an ethical collector, must analyze data from diverse populations to prevent analytic biases from forming, and must work to develop “lay language” for communicating results and methods plainly.