Privacy

Within the realm of survey research, privacy consists of the right to control access to one's self and one's personal information. Private behavior occurs in a context in which an individual can reasonably expect that no observation or recording is taking place. Privacy is distinct from confidentiality in that privacy refers to the protection of the right of individuals, whereas confidentiality refers to the protection of the data collected.

Identity, health and financial information, criminal justice involvement and court records, education, and work performance data are commonly regarded as private, despite the fact that many are commonly accessible through credit-reporting background check agencies.

The distinction between public and private behaviors is often ambiguous. Some information that becomes part of public record, such as a person's phone number, marital status, or income, would be considered private information and in the United States is covered by a federal law, the Family Educational Rights and Privacy Act, also known as FERPA or the Buckley Amendment. Some behaviors that occur in the public realm, such as a person's presence in a “red-light district,” hospital emergency room, stock brokerage, or welfare office may also be considered private.

An individual's ability to control access to their personal information is often determined by socioeco-nomic status, age, and other circumstances. For example, information about receiving welfare or credit history is public, whereas account balances are not, unless you are a government official. Minors have generally fewer rights to privacy than do adults. Institutionalized persons may have significant limitations on their ability to control personal information.

The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule regulates the disclosure of information about health status, provision of health care, or payment for health care that can be linked to an individual. Student education records are protected by the FERPA. In the United States, however, there is no comprehensive federal law protecting all the private records and information of individuals. In contrast, the European Directive on Data Protection requires countries in the European Union (EU) to have government data protection agencies, requires registration of databases with those agencies, and in some cases requires prior approval before personal data processing begins. In order to bridge these different privacy approaches and provide a streamlined means for U.S. organizations to comply with the directive, the U.S. Department of Commerce in consultation with the European Commission developed a “safe harbor” framework. The safe harbor—approved by the EU in July 2000—provides direction for U.S. companies to help them comply with European privacy laws.

Institutional review boards (IRBs) provide critical oversight for human subjects research to ensure that research does not constitute an invasion of privacy. An individual's right to privacy from research, including survey research, is generally protected by the right to refuse to participate in research or to refuse to answer any individual question with a survey or interview. Controversy issues arise when investigators wish to use personally identifiable records or observe behavior without obtaining consent. In general, if data [Page 615]are publicly available and cannot be linked to any identifiable subjects, there are no privacy concerns.

...