Studies of Welfare Populations: Data Collection and Research Issues. Fair Information Practices

06/01/2002

Several important bodies of federal law and regulation protect privacy and confidentiality of individuals served by one or more government programs, and about which government collects information. These laws reflect the Fair Information Practice Principles that were voluntarily developed and adopted by several government groups and privacy sector organizations in the 1970s. In 1973, the U.S. Department of Health, Education, and Welfare's (HEW's) Advisory Committee on Automated Personal Data Systems, Records, Computers and the Rights of Citizens published these principles in the report, Records, Computers, and the Rights of Citizens. These principles have served as the basis for formulation of the federal Privacy Act of 1974, the Freedom of Information Act, and subsequent federal laws and regulations. The Committee recommended five basic information principles for governing the use of personal information:

  1. There must be no personal data record-keeping systems whose very existence is secret.
  2. There must be a way for a person to find out what information about the person is in a record and how it is used.
  3. There must be a way for a person to prevent information about the person that was obtained for one purpose from being used or made available for other purposes without the person's consent.
  4. There must be a way for a person to correct or amend a record of identifiable information about the person.
  5. Any organization creating, maintaining, using, or disseminating records of identifiable personal data must assure the reliability of the data for their intended use and must take precautions to prevent misuses of the data.

These principles were clearly developed to regulate situations where data would be used to learn about individuals or to make decisions about them.(5) Rules 1, 2, and 4 require that individuals know about databases and can correct faulty information. These are important principles for agencies that collect information, but they have little relevance for researchers who want to use these data. Rules 3 and 5, however, propose strict ground rules for researchers' use of data. Under the strictest construction, they might require researchers to get prior consent from subjects for the use of administrative data. In reality, federal law has been somewhat less restrictive than this construction might imply.

Numerous federal privacy and confidentiality laws have been enacted in recent decades that elaborate on the Fair Information Practices. These include the Privacy Act of 1974 and the Data Matching and Privacy Protection Act of 1988.(6)

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