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Robbee Wedow, Assistant Professor of Sociology and Data Science, Purdue University

Researchers can learn a lot with your genetic information, even when you skip survey questions – yesterday's mode of informed consent doesn't quite fit today's biobank studies

Participants in biobank studies are often asked for broad consent to use their data. Science Photo Library - TEK IMAGE/Brand X Pictures via Getty Images

Imagine you agreed to be part of a new and exciting long-term research study to better understand human health and behavior. For the past few years, you’ve been visiting a collection site where you fill out some questionnaires about your health and daily activities. Research assistants take your height, weight and some other physical characteristics about you. Because you agreed to contribute your genetic data to the study, you also provided a saliva sample during your first visit.

Later, you see a news article reporting that researchers analyzing data from the study you’re participating in have found genetic variants that predict the likelihood of someone completing college. You remember reading a long form when you consented to giving your data, but you can’t quite remember all the details. You know the study was about health, but how do these findings about genes and education have anything to do with health? Did they analyze your data specifically? What did they find?

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