Beyond IRBs: Designing Ethical Review Processes for Big Data Research

Conference Proceedings by Future of Privacy Forum: “The ethical framework applying to human subject research in the biomedical and behavioral research fields dates back to the Belmont Report.Drafted in 1976 and adopted by the United States government in 1991 as the Common Rule, the Belmont principles were geared towards a paradigmatic controlled scientific experiment with a limited population of human subjects interacting directly with researchers and manifesting their informed consent. These days, researchers in academic institutions as well as private sector businesses not subject to the Common Rule, conduct analysis of a wide array of data sources, from massive commercial or government databases to individual tweets or Facebook postings publicly available online, with little or no opportunity to directly engage human subjects to obtain their consent or even inform them of research activities.

Data analysis is now used in multiple contexts, such as combatting fraud in the payment card industry, reducing the time commuters spend on the road, detecting harmful drug interactions, improving marketing mechanisms, personalizing the delivery of education in K-12 schools, encouraging exercise and weight loss, and much more. And companies deploy data research not only to maximize economic gain but also to test new products and services to ensure they are safe and effective. These data uses promise tremendous societal benefits but at the same time create new risks to privacy, fairness, due process and other civil liberties.

Increasingly, corporate officers find themselves struggling to navigate unsettled social norms and make ethical choices that are more befitting of philosophers than business managers or even lawyers. The ethical dilemmas arising from data analysis transcend privacy and trigger concerns about stigmatization, discrimination, human subject research, algorithmic decision making and filter bubbles.

The challenge of fitting the round peg of data-focused research into the square hole of existing ethical and legal frameworks will determine whether society can reap the tremendous opportunities hidden in the data exhaust of governments and cities, health care institutions and schools, social networks and search engines, while at the same time protecting privacy, fairness, equality and the integrity of the scientific process. One commentator called this “the biggest civil rights issue of our time.”…(More)”