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Studies of Welfare Populations: Data Collection and Research Issues
ers only need to be used at the time when data are merged. As soon as records are matched, the identifiers are no longer needed and can be removed. The merged data can be restricted to a small group of researchers, and procedures can be developed to prohibit any decisions from being made about individuals based on the data. Nevertheless, even data matching can lead to concerns about invasions of privacy and breaches of confidentiality.
Both data sharing and data matching require the careful consideration of privacy issues and techniques for safeguarding the confidentiality of individual level data. The starting place for understanding how to attend to these considerations is to review the body of law about privacy and confidentiality and the definitions of key concepts that have developed in the past few decades. After defining the concepts of privacy, disclosure, confidentiality, and informed consent, we then briefly review existing federal privacy and confidentiality laws.
The right to privacy is the broadest framework for protecting personal information. Based on individual autonomy and the right to self-determination, privacy embodies the right to have beliefs, make decisions, and engage in behaviors limited only by the constraint that doing so does not interfere unreasonably with the rights of others. Privacy is also the right to be left alone and the right not to share personal information with others. Privacy, therefore, has to do with the control that individuals have over their lives and information about their lives.
Data collection can intrude on privacy by asking people to provide personal information about their lives. This intrusion itself can be considered a problem if it upsets people by asking highly personal questions that cause them anxiety or anguish. However, we are not concerned with that problem in this paper because we only deal with information that has already been collected for other purposes. The collection of this information may have been considered intrusive at the time, but our concern begins after the information has already been collected. We are concerned with the threat to privacy that comes from improper disclosure.
Disclosure varies according to the amount of personal information that is released about a person and to whom it is released. Personal information includes a broad range of things, but it is useful to distinguish among three kinds of information. Unique identifiers include name, Social Security number, telephone number, and address. This information is usually enough to identify a single individual or family. Identifying attributes include sex, birth date, age, ethnicity, race, residential address, occupation, education, and other data. Probabilistic matching techniques use these characteristics to match people across datasets when unique identifiers are not available or are insufficient for identification.