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Human Subjects Division (HSD)

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Subject Privacy, Confidentiality and Identifiable Data

The IRB is responsible for evaluating proposed research to ensure adequate provisions to protect the privacy of participants and to maintain the confidentiality of data. The conduct of research in which participation and data collected are anonymous is one approach toward the outcomes of privacy and confidentiality.

Considering the confidentiality of human subjects is an important part of any research activity. When possible, it is best to retain research data without any identifiers so that individual participation is anonymous and the data collected cannot be linked to the individual subject. Where anonymity is not possible, researchers should take steps to preserve the confidentiality of study participants and the data collected from them.

There are, however, ethical or legal limits to confidentiality, for example, when a researcher obtains information subject to mandatory reporting, such as evidence of child abuse. If it is probable that information subject to mandatory reporting may be collected during the course of the study, a researcher should state these exceptions to confidentiality in the consent form.

In general, researchers are obliged to provide the level of confidentiality specified in the consent materials. It is thus very important, when designing a study, to reflect on any situation in which a researcher may feel some pressure to release information, and to specify any related exceptions or limitations to confidentiality in the consent materials.

Related Questions And Answers

  • Confidential or Anonymous?

    Anonymity and confidentiality are not the same.

    Data

    When data are anonymous, they are not linked to the identity of individual subjects in any way that would make it possible to connect the information to the individual from whom it came. Anonymous data do NOT have direct identifiers like names, addresses, clinic or hospital number, Social Security Number, or insurance agency numbers.

    Data that are linked to subjects via a CODE are NOT anonymous.

    When data are confidential, there is a link between data and the individuals who provide it, but the link is obscured by coding or other procedures so that even someone who has access to the raw data cannot identify a subject without also having access to the link between the subject code and the subject\'s identity.

    Participation

    When participation is anonymous, it is impossible to know whether or not an individual participated in a study.

    When participation is confidential, the study participation of a specific individual is recorded, but cannot be known by anyone except the researcher and authorized research staff who have legitimate access to participation records.