Massive amounts of new data on human beings can now be accessed and analyzed. Much has been made of the many uses of such data for pragmatic purposes, including selling goods and services, winning political campaigns, and identifying possible terrorists. Yet “big data” can also be harnessed to serve the public good: scientists can use new forms of data to do research that improves the lives of human beings, federal, state and local governments can use data to improve services and reduce taxpayer costs, and public organizations can use information to advocate for public causes.
Much has also been made of the privacy and confidentiality issues associated with access. A survey of statisticians at the 2013 Joint Statistical Meeting found that the majority thought consumers should worry about privacy issues, and that an ethical framework should be in place to guide data scientists. Yet there are many unanswered questions. What are the ethical and legal requirements for scientists and government officials seeking to serve the public good without harming individual citizens? What are the rules of engagement? What are the best ways to provide access while protecting confidentiality? Are there reasonable mechanisms to compensate citizens for privacy loss?
The goal of this book is to answer some of these questions. The book’s authors paint an intellectual landscape that includes the legal, economic and statistical context necessary to frame the many privacy issues, including the value to the public of data access. The authors also identify core practical approaches that use new technologies to simultaneously maximize the utility of data access while minimizing information risk. As is appropriate for such a new and evolving field, each chapter also identifies important questions that require future research.
The work in this book is also intended to be accessible to an audience broader than the academy. In addition to informing the public, we hope that the book will be useful to people trying to provide data access but protect confidentiality in the roles as data custodians for federal, state and local agencies, or decision makers on institutional review boards.
Mendeley saves you time finding and organizing research
Choose a citation style from the tabs below