Ethics: Privacy & Confidentiality

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1. privacy an individual's right to be free from 14. how can privacy personal information is stored securely,
intrusion or interference by others be safeguarded be aware of privacy laws, papers
during DATA should be kept in a locked cabinet,
2. confidentiality researcher's ethical obligation to
STORAGE stage? digital forms should be encrypted and
safeguard anything participants reveal to
password protected
them in confidence
15. how can privacy data is presented in aggregate forms,
3. 4 reasonable 1) info will not be linked to other info
be safeguarded descriptions of participants are limited,
expectations of without consent 2) info will not be made
during SHARING share information that participants
privacy available to others 3) info will be store
OF FINDINGS consented to
securely then destroyed 4) info will not
stage?
be released unless granted
16. 4 consequences of 1) harm in relationship between
4. 5 categories of 1) directly identifying information 2)
confidentiality researcher and participants 2) harm to
identifiability of indirectly identifying information 3)
breaches other individuals/groups affiliated with
information coded information 4) anonymized
participants 3) harm to credibility of
information 5) anonymous information
research 4) harm to reputation of
5. directly contains unique identifiers that identify research community
identifying an individual
17. what can the let participants know during consent
information
researcher do if process
6. indirectly can an identify individual when there is a
identifying combined with other identifiers possibility that
information they will have to
7. coded information direct identifiers are removed and breach
replaced with code, only those with confidentiality?
access can identify participants 18. secondary use of data collected for one study is used for
8. anonymized direct identifiers are removed, no codes data another research purpose
information are kept 19. what to do if there the data cannot be used at all, unless
9. anonymous there were never any identifiers with the is a possibility that TCPS2 and REB agrees with rationale
information information secondary users of for exception.
data can identify
10. who is the researcher
participants
responsible for
maintaining 20. what to do if original researcher recontacts, specify
confidentiality? secondary data possibility in original consent form, seek
use requires follow consent again
11. how can privacy keep identifiers apart from data, govern
up interviews with
be safeguarded who has access to participant info
participants
during
RECRUITMENT 21. security measures used to protect information
stage? 22. personally information that may reasonably be
12. how can privacy keep consent form separate from data identifiable expected to identify an individual alone
be safeguarded information (PII) or in combination with other available
during CONSENT information
stage? 23. 3 types of directly identifying information
13. how can privacy assign codes to participants, keep code information at high indirectly identifying information
be safeguarded in a secure place, control access to data to moderate risk of coded information
during DATA and coding key identifying
COLLECTION subjects
AND ANALYSIS 24. 2 types of anonymized information
stage? information at low anonymous information
to very low risk of
identifying
subjects
25. 2 rules of researcher's ethical
duty of confidentiality
26. 8 factors relevant to the REB's
assessment of the adequacy of
the researcher's proposed
measures for safeguarding
information
27. 6 requirements for secondary
use of identifiable data to be
accepted by the REB
researcher shall safeguard information entrusted to them and not misuse or wrongfully disclose it,
researchers shall describe measures for meeting confidentiality obligations and explain any
reasonably foreseeable disclosure agreements
1) the type of info collected 2) the purpose of info usage 3) limits on the use, disclosure and
retention of info 4) risks to participants should data be breached 5) appropriate security
safeguards for the full life cycle of info 6) any recording of observations that may identify
participants 7) anticipated uses of personal information 8) anticipated linkage uses of data
gathered with other data of participants
1) info is essential to the research 2) the use of identifiable info without participant consent is
unlikely 3) the researchers will take appropriate measures to protect the privacy of individuals 4)
the researchers will comply with any known preferences of individuals 5) it is impossible to seek
consent from individuals 6) the researchers have obtained permission from participants