SOCIAL NETWORKS AND HEALTH 2016 workshop

1. Network Study Design: Ethical Considerations
and Safeguards
Duke Network Analysis Center
Social Networks and Health
18 May 2016

2. The Belmont Report: Guiding Ethical Principles
to Social Science Research
Respect for Persons
Autonomy
Voluntariness
Informed Consent
Beneficence
Do not harm
Maximize possible benefits/Minimize Possible Harms
Justice
The risks and benefits of research should be
equitably distributed
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3. Questions of Informed Consent and Privacy
Key Components of Informed Consent
Disclosing to potential research subjects information needed to
make an informed decision
Facilitating the understanding of what has been disclosed
Promoting the voluntariness of the decision about whether or not
to participate in the research.
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4. Risks in Social Network Studies
In most social network research, the chief risk to respondents is that of
being stigmatized as a result of being identified as belonging to a
stigmatized category or group (e.g., sex workers, drug addicts), or from
adverse consequences resulting from revealing an individual’s role or
position in a social setting (e.g., discovering you are the least liked
individual in your organization).
Social network research shares these risks with other forms of survey-
based research that examine the impact of one’s social environment on
phenomena such as risk taking, mental health, and attitudes towards
medical providers.
However, there are some unique sources of risk.
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5. Potential Risks Associated with Relational Data
Outing People
Minor: Mom Finds Out Mike Smokes
Major: Wife Finds Out that Her Husband Has Been Cheating
Legal Risks
If you trace a relationship between an adult and a child that
would be treated as contributing to the delinquency of a
minor, are you legally obligated to report the relationship?
If a known-to-be STD positive person names a partner, do
we inform the partner of the respondent’s STD status?
Detecting Fraud
Network analyses can reveal inconsistencies that suggest
fraud (very high degree, say, or sharing patients in a way
that is highly irregular
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6. Privacy Challenges Associated with Relational
Data
Deductive Disclosure
The Confidentiality of Alters
5

7. Deductive Disclosure
Associated with roster study designs (e.g., studies of school,
hospital, or neighborhood populations)
Trinity College of
Arts and Sciences
1416
Sociology
Department
48
Arabic
Speakers
2
Other
Disciplines
Non-Arabic
Speakers
US Veteran
1
Civilians
and Service
Members
Lover of Unreasonably Sized Fortune Cookies 6

8. Deductive Disclosure: Add Health Example
Start with: 87
Black, Female, 12th Graders in Two parent Households:
Who have Never been Held Back:
77
And Smoke Regularly:
5
And Have 2 siblings
1
And are Catholic
1
7

9. The Confidentiality of Alters
A
B
C
A
B
C
A
B
C
A
B
C
D
A A A A
B B
B B
C C C C
D
8

10. Confidentiality of Alters
1
2
1
2
3
Adapted from Klovadhl 2005
1 2
3
4 5
Jon GM
Jake
Laura
Jim KC
KJ
LA
Jim KC
Laura Jon GM
Jake KJ
LA
9

11. Risk Mitigating Strategies
Data Agreements and Initial Precautions
Data Management Procedures
Training
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12. Data Agreements
When collecting data establish:
Who owns the data
How will it be collected
Who stores and processes it
How long will identifying information be retained
Who has access to identifying information
The answers to these questions can help in determining whether you
believe the study can be conducted in an ethical manner. 11

13. Data Management Steps
Segment the data collection instrument to separate
identifying information from other kinds of information
Restrict the number of personnel who have access to
identifying information, and who process the raw data
Restrict the processing of data to safe environments
(e.g., administered internal networks)
Never transfer raw data over the internet, and never
transport encrypted data and passwords together
Secure raw, preferably encrypted, data and backups in a
secure location at the end of each day
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14. Training
More than the perfunctory completion of
CITI/IRB training not only helps avoid
potentially hurtful mistakes but also saves time
by training you to think like the IRB
With the ability to quickly collect data on
emerging digital platforms (e.g., the Volunteer
Science Platform or Mechanical Turk), young
researchers have to start thinking like PIs even
sooner.
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15. Concluding Thoughts
Social network studies are important, but they require
us to safeguard not only the privacy of our participants
but also of their alters.
Consequently, researchers conducting network studies
must be very explicit in communicating how the
study’s procedures effectively mitigate the risks posed
by relational data .
For IRBs less familiar with network methodologies,
this often requires building trust by meeting with IRB
administrators in face-to-face meetings.
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16. Other Ethical Considerations/Questions?
Thoughts for the Group
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