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MyEnvironment Study on Safe Data Sharing for Environmental Health

Researcher
Julia Brody, PhD, Ruthann Rudel, MS, and Julia Udesky, SM, Silent Spring Institute; Phil Brown, PhD, Northeastern University; Latanya Sweeney, PhD, Harvard University
Study abstract

Analyses of the links between the environment and breast cancer are often hampered by small sample sizes and low statistical power due to the difficulty and expense of collecting and analyzing personal environmental exposure data. Pooling data across studies and making data quickly and widely available to other investigators to examine new questions can both reduce monetary burden and speed up research. However, this enhanced data utility may come at a cost to participant privacy. In this project, the research team will examine how to communicate with prospective research participants about potential risks and benefits when asking for permission to share environmental health data. The research team will first use a vignette survey to investigate participant beliefs and decisions about consent to share data in hypothetical scenarios that represent different data types, researchers and research purposes. The research team will ask what participants think are the risks and benefits of each scenario, and how willing they would be to share different types of data. In a second stage, the research team will conduct a study of environmental health knowledge and behavior, and test whether providing supplemental information during the informed consent process affects participation rates.

Study review

This study was designed to identify the best ways to communicate with potential study participants about the risks and benefits of sharing environmental health data online in different types of scientific databases. The researchers turned to the Army of Women (AOW) to help enroll up to 10,000 volunteers from anywhere in the U.S. The Call to Action for this study was sent to AOW members on May 25, 2016. The researchers closed enrollment on April 10, 2017, after the AOW provided them with 2,212 women who were interested in enrolling in the study.