Big Data is a term WPF uses to describe very large datasets and the technologies and practices of handling those datasets. Typically, Big Data datasets are so large that traditional database systems are not able to handle or analyze them.
Sources for Big Data are many and varied. They include web data, sensors, cell towers, census data and other data from the government, social media, transactional data, and a variety of other data collection systems.
We have seen a tendency to use the term Big Data as a loosely defined stand-in for a number of privacy issues that sound the same, but aren’t. For example, Big Data and Data Brokers are sometimes used together. The two ideas are distinct and different, and it is crucial for public policy and discussion that the two are not conflated as being the same thing or even a similar thing. It is possible to work with Big Data and never be a Data Broker.
Large datasets are intriguing to the World Privacy Forum, and our research on large datasets resulting from sensors and ID cards in Asia helped us understand and explore the issue in-depth. Large datasets sometimes present privacy challenges, but sometimes they do not. Much depends on how the dataflows are collected, managed, stored, and so forth. Understanding these differences and knowing when and where the challenges are is going to be important going forward in this rapidly evolving space.
Genetic privacy | SACGHS — The World Privacy Forum gave testimony to the Secretary’s Advisory Committee on Genetics Health and Society regarding privacy issues stemming from direct-to-consumer advertising and consumer-initiated genetic testing. The World Privacy Forum noted that a great deal of consumer health data circulates outside the protections of HIPAA, and a substantial market for this kind of consumer health data already exists. Genetic data about consumers that is acquired outside the clinical context and is not subject to the protections of HIPAA (for example, through consumer-initiated genetic testing) will likely not be any more protected than other forms of consumers’ health-related information from the current demands of the market. However, the consequences of leakage of genetic information about consumers into the marketing stream could have potentially negative consequences for both those consumers and their blood relatives. The World Privacy Forum urged the committee to include specific recommendations about privacy in its upcoming report to the Secretary, and also urged the committee to work with other federal agencies to set up a pre-market oversight structure that includes significant and meaningful privacy protections for genetic testing occurring outside of the protections of HIPAA.
Genetic Privacy — The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.
Privacy Act of 1974 — In response to a proposed Department of Homeland Security rulemaking regarding a system of records, the World Privacy Forum filed comments requesting changes. The primary objections are that the proposed system of records commingles records and functions, the proposed exemption is inconsistent with the system notice, and DHS’s proposed exemption from civil remedies was not correct, among other issues. The World Privacy Forum stated in its comments that the Department of Homeland Security should demonstrate its commitment to accountability and transparency in the rulemaking.
Internet privacy — The World Privacy Forum announced today that it would be filing a complaint with the Federal Trade Commission about the posting by AOL of a portion of its users’ search data on the Internet. While the data was not expressly identified by name, the search queries themselves included in some cases personally identifiable information such as individuals’ names, Social Security Numbers, and myriad other personal information. The World Privacy Forum urges consumers to take precautions when using search engines.
Genetic privacy — The collection of DNA material from 500,000 to 1,000,000 or more individuals as part of a large U.S. medical research project raises many challenging ethical, legal, and privacy issues. An advisory committee reporting to the Office of the Secretary of Health and Human Services ( the Secretary’s Advisory Committee on Genetics, Health and Society) has published a detailed analysis of the issues such a project and its associated databases and biobanks would raise in a draft report. The committee’s final report and policy recommendations will be submitted to the Secretary of HHS. The World Privacy Forum has submitted public comments on the draft; the comments include key policy recommendations.