Studies of Welfare Populations: Data Collection and Research Issues. Informed Consent and Notification

06/01/2002

The strongest form of explicit agreement between the data subject and the data collector regarding access to the personal information collected is informed consent. An underlying principle of informed consent is that it should be both informed and voluntary. In order for consent to be informed, the data subject must understand fully what information will be shared, with whom, how it will be used, and for how long the consent remains in effect. Consent requires that the subject indicate in some way that he or she agrees with the use of the information.

Consent can be written, verbal, or passive. Written consent occurs when a data subject reads and signs a statement written by the data collector that explains the ways information will be used. Verbal consent occurs when a data subject verbally agrees to either a written or verbal explanation of how information will be used. Verbal consent is often used when data subjects are contacted over the telephone, when they are illiterate, or when written consent might create a paper trail that might be harmful to the subject.

Passive informed consent is similar to, but distinct from, notification. Passive consent occurs when people have been notified about the intent to collect or use data and told that their silence will be construed as consent. They can, however, object and prevent the collection or use of the data. With notification the elements of choice and agreement are absent. People are simply informed that data will be used for specified purposes. Notification may be more appropriate than informed consent when data provided for stated purposes are mandatory (such as information required for participation in a public program).

Some privacy advocates believe that conditioning program participation on the completion of blanket information release consent forms is not voluntary (Preis, 1999). Without choice, it is argued that the integrity of the client-provider relationship is compromised. As a result, many confidentiality statutes and regulations provide a notification mechanism so that the subjects of data being released can be informed of the release (e.g., Privacy Act), or they provide a mechanism for data subjects to decide who will be allowed access to their personal information (e.g., Chapter 509, California Statutes of 1998).

One of the difficulties facing data users in attempting to gain informed consent is that it is often very hard to describe the ultimate uses to which information will be put, and blanket descriptions such as "statistical purposes" are often considered too vague by those who regulate the use of data. It is also possible that data users may want to use the data for reasons not previously anticipated when the data were originally collected and, hence, not described when informed consent was initially granted from data providers. In such cases, data users may need to recontact data providers to see if providers are willing to waive confidentiality or data access provisions covering their data for the new uses of the data. However, the legality of these waivers is still being sorted out. See NRC (1993) for an example of a case where such waivers were not considered sufficient to cover the public release of collected data.

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