Download Confidentiality test

Privacy &
Confidentiality
By Joan Sieber
California State University, Hayward
People want to control…
 The
time and place where they give
information.
 The
nature of the information they give.
 The
nature of the experiences that are given
to them.
 Who
receives and can use the information.
Example of a
Personal Privacy Issue
in Research:
A hidden video camera denies
subjects the control of
access to themselves.
They should be warned!
Privacy
Privacy refers to persons and to
their interest in controlling
access of others to themselves.
(Confidentiality refers to data.)
Researchers should respect
people’s privacy
But – What is Private?
The IRB’s Dilemma
The Federal Regulations do not Define
Privacy. The Guidebook from the Office for
Human Research Protections (OHRP) says:
“Decide whether there is an invasion of
privacy. There are no criteria. Base your
decision on your own sense of propriety. “
Judging privacy by one’s
own sense of propriety
sets an ethnocentric,
capricious, and
inconsistent standard for
judging privacy.
Besides, what’s private to you
here, today, differs from….
Last
year
Tomorrow
When you are elsewhere
When you were a child
Ability to regulate access of others to
oneself (privacy) varies with:
 Status
 Context
 Role
 Culture
 Verbal
 Technology
skill
 Stage of
development
used in the
research
What is Private Also Varies with:
 Gender
 Ethnicity
 Age
 Socio-economic
class
 Education
 Ability level
 Social/verbal skill
 Health
status
 Legal status
 Nationality
 Intelligence
 Personality
 Relationship to
researcher
A young child would want
a parent present at a
session with a researcher.
A teenager has different issues
of personal privacy,
and would want
the parent absent.
Another perspective on privacy:
Is the information sought any of the
researcher’s business?
The subject’s answer depends on:
Factors in the subject’s background, beliefs and context.
Who is sponsoring the research.
The purpose of the research.
The questions being asked – are they sensitive, relevant to
the ostensible purpose of the research.
Whether the subject likes the researcher (interviewer) .
Some factors determining liking
of the researcher:
 Method
of recruitment
 Researcher’s body language and rapport
 Convenience of the research time and
place
 Ethnicity, gender, apparent social class of
the researcher in relation to the subject
 Eye contact, speech patterns, posture
 Cultural sensitivity
Ways to Learn about Privacy
Interests of Research Population

Ethnography

Networks of professionals, gatekeepers,
leaders who work with the population.

Focus groups

Community consultation

“Native” research associates

What else?
WAYS TO RESPECT
PRIVACY IN RESEARCH
consent – if effectively done!
 Knowledge of subject’s culture.
 Rapport and sensitivity to individuals.
 Research associates from that culture.
 Extensive consultation with appropriate
professionals & peers of subjects.
 Analyze the research context & technology.
 Informed
What is Confidentiality?
 Confidentiality
is about data (not
people), and about agreements and
procedures for limiting the access of
others to data.
 There are ever-increasing methods of
assuring confidentiality, along with
ever increasing high-tech methods of
breaching confidentiality.
THE
COMMON RULE
DOES NOT
DEFINE
CONFIDENTIALITY
Suggested Definition
Confidentiality is an extension
of the concept of privacy; it refers to data
(identifiable information about a person)
and to agreements about how data
are to be handled in keeping
with subjects’ interest in controlling the access
of others to information about themselves.
Implication
 Craft
the kind of promise of confidentiality
that is appropriate to the research context
and to the needs of subjects.
 Be
specific about the confidentiality
agreement in the informed consent
process.
 Whatever
you promise, make sure you
can keep your promise.
 Be
mindful of threats to confidentiality.
The IRB Guidebook
Advises...
At least
one IRB member
should be aware
of mechanisms for assuring
confidentiality.
Most research methods
courses do not teach
confidentiality methods.
In short, ...
The
regs are no help.
The OHRP guidebook
is naïve.
Research training is
inadequate.
It is hard to find the
many techniques for
protecting confidentiality:





Inter-file linkage
Error inoculation
Statistical
strategies
Top coding
Restricted public
use data

Restricted access,
enclaves, archives
 Certificates of
Confidentiality
 Ethical editing of
qualitative descriptions
 Data brokering
And no one tells you where to
find these techniques...
…which are scattered in
various obscure applied
research literatures.
But the good news is …
They’re in your handout!!!!
Quick Review of Handout

Procedures that eliminate linkage of data to unique
identifiers

Intersystem linkage (alias; broker, etc.)

Statistical strategies: top coding or raw data or descriptive
statistics

Contractual Agreements or Licensing: Data sharing,
secondary analysis, or audit of data

Legal protections – Certificate of Confidentiality

Descriptive statistics and raw data releases – disclosure
review to prevent re-identification
The Privacy & Confidentiality Test
 Privacy
test: Does the subject think
the information sought is any of the
researcher’s business? Is the subject
comfortable in the research setting?
 Confidentiality test: Is the subject
satisfied with the methods that will be
used to control who can have access
to the data?
Small Group Problem Solving

Referring to the 3 vignettes & 2 protocols:





Identify privacy issues
What kinds of confidentiality agreement should be
made?
What are some possible threats to confidentiality?
What confidentiality assuring techniques should be
considered (refer to handout).
Whose privacy and confidentiality is at issue: are
there group, as well as individual, considerations?