The World Privacy Forum filed comments with the U.S. Department of Commerce in response to its Request for Comments about big data, privacy, and the Consumer Privacy Bill of Rights. The White House Big Data report recognized that Big Data “raises considerable questions about how our framework for privacy protection applies in a big data ecosystem” and has the potential to “eclipse longstanding civil rights protections in how personal information is used in housing, credit, employment, health, education, and the marketplace.” This is among our concerns as well, and our comments focused on understanding big data’s benefits while drawing attention to where there are significant privacy risks that need to be addressed.
The World Privacy Forum’s recent public comments to the White House regarding Big Data focus on using a foundation of Fair Information Principles to address issues connected to bias, error, and privacy regarding big data as applied to vulnerable populations. The comments also discuss large medical research data sets, and stress the importance of applying
This op ed was originally published Wednesday, March 19 2014 in IAPP for the FTC Alternate Scoring Conference.
In our modern sea of data, the resources to examine all relevant information regarding a decision is no longer feasible, so we use shortcuts. Consumer scores built using predictive analytics and fed by large datasets are the modern-day shortcuts to understanding individual consumer behavior. That’s why new and unregulated consumer scores abound. They are used widely in today’s world to predict consumers’ behavior, spending, health, fraud, profitability, and much more. These scores rely on petabytes of information coming from newly available data streams, and some old ones.
Chris Hoofnagle of Berkeley Law has just published arguably the single most important archive in privacy today: it is the transcripts of six of the HEW meetings in the early 197os that formed the origins of today’s Fair Information Practices. FIPs have now for 40 years formed the cornerstone of most of the privacy laws passed globally. Long lost to the dust of time, the original hearing transcripts have never been available online, and even access to the paper versions have not been widely available.
WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy. “We are most concerned in our comments that the NIH find a full range of privacy protections for genomic data to be used for research. We are interested in a full arsenal from encryption to certificates of confidential to civil and criminal penalties for misuse. Consent — as alluring as the idea is — cannot by itself carry all of the privacy water,” said Pam Dixon, executive director of the World Privacy Forum.