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Accessing Private Information
: : Personal Interviews
: : Surveys, Questionnaires and the Collection of Data
: : Secondary Use of Data
: : Data Linkage
Where the research subject will be identified in publications (for example,
public or literary figures), researchers must obtain REB approval and
the free and informed consent
of the research subject before undertaking personal interviews to secure
identifiable personal information.
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Surveys, Questionnaires
and the Collection of Data
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Where identifiable personal
information about research subjects is obtained using questionnaires,
surveys and other methods, researchers must secure REB approval before
starting the research. The researchers and REB should attempt to anticipate
potential threats to privacy, confidentiality and anonymity of any given
research project by considering:
- the type of data to be collected
- the purpose for which the data will be used
- limits on the use, disclosure and retention of the data
- appropriate safeguards for security and confidentiality
- any modes of observation (e.g., photographs or videotapes) or access
to information (e.g., sound recordings) in the research that allow identification
of particular subjects
- any anticipated secondary
use of data
- any anticipated data linkage
- provisions for confidentiality of data resulting from the research.
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The TCPS defines secondary use of data as "the use in research of
data contained in records collected for a purpose other than the research
itself" (p. 3.4). These records include academic records held at
schools and universities, hospital and laboratory records, employee records,
and birth and death certificates. Researchers should seek REB approval
for secondary uses of data if identifiable
personal information is involved. In deciding whether to allow access
to the existing data for research, the REB should take into account:
- the degree to which identifying information is essential to the research
- the measures in place to protect privacy of the individuals and the
confidentiality of the data, and to minimize harms to subjects
- whether the individuals to whom the data refer have objected to secondary
use of the data.
In research that involves more than minimal
risk, the REB may require:
- free and informed consent
from the research subjects, or
- a strategy for informing the research subjects, or
- consultation with representatives of those who contributed the data.
Researchers must seek the authorization of the REB before contacting
the people to whom the data relate.
The REB must review research that involves data
linkage.
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