Privacy and Confidentiality
Privacy
An individual’s right to be free from intrusion or interference by others
Consent
An indication of agreement by an individual, or their authorized third party, to become a participant in a research project (= free informed ongoing consent)
Physical safeguards (Examples)
Use of the locked filing cabinets, and the location of computers containing research data away from public areas
The size of pool (the number of people in any one 'pool') to promise confidentiality
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Physical Risk (Examples)
Bodily contact or administration of any substance
Direct identifiers
The information identifies a specific individual through direct identifiers (e.g., names, voice, social security numbers)
Undue influence
The impact of an unequal power relationship on the voluntariness of consent
(Data) Security
Physical, administrative, and technical measures used to protect information.
What observational studies are exempt from REB review?
Observation of behaviour in public places where there is no expectation of privacy
Psychological Risk (Examples)
Feeling demeaned, embarrassed, worried, or upset
Indirectly identifiers (Examples)
Date of Birth, Occupation, Ethnicity, Gender, First three digits of the postal code
Coercion
An extreme form of undue influence, involving a threat of harm or punishment for failure to participate in research
Confidentiality
Ethical/legal responsibility of individuals... to safeguard information entrusted to them from unauthorized access, use, disclosure, modification, loss or theft
Alternatives to written consent
oral consent, a consent log, audio or video recordings, oral consent documented in field notes
Social Risk (Examples)
Possible loss of status or reputation
Anonymized information
The information is irrevocably stripped of direct identifiers;a code is not kept to allow future re-linkage, and risk of re- identification of individuals from remaining indirect identifiers is low or very low
How to manage dual roles
Separate their role as researcher from their other roles; Disclosure in the consent process
Administrative safeguards
Making and enforcing rules about who has access to personal information about participants
Preliminary Activities Not Subject to REB Review
Note taking, diary writing and observation long before the researcher formalizes a research project
Privacy Risk (Examples)
Participants' physical privacy; privacy of the data provided; privacy with respect to research participation
Anonymous information
The information never had identifiers associated with it (e.g., anonymous surveys)
Incidental findings
Unanticipated discoveries made in the course of research but that are outside the scope of the research
What should researchers do when participants want to be identified
Obtain their consent, and specify how they may be identified for their contribution
Difference between confidentiality and anonymity
Confidentiality - Identified data were collected; Anonymity - No identifiers were collected
Minimal Risk
Risks experienced in everyday life