Network Study Design: Ethical Considerations and Safeguards

Duke Network Analysis CenterSocial Networks and Health

18 May 2016

The Belmont Report: Guiding Ethical Principles to Social Science Research

Respect for PersonsAutonomy

Voluntariness

Informed Consent

BeneficenceDo not harm

Maximize possible benefits/Minimize Possible Harms

JusticeThe risks and benefits of research should be equitably distributed

1

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.

2

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.3

Potential Risks Associated with Relational Data

Outing PeopleMinor: Mom Finds Out Mike Smokes

Major: Wife Finds Out that Her Husband Has Been Cheating

Legal RisksIf 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

4

Privacy Challenges Associated with Relational Data

Deductive Disclosure

The Confidentiality of Alters

5

Deductive DisclosureAssociated 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 Veteran1

Civilians and Service Members

Lover of Unreasonably Sized Fortune Cookies 6

Deductive Disclosure: Add Health Example

Start with: 87Black, Female, 12th Graders in Two parent Households:

Who have Never been Held Back:77

And Smoke Regularly:5

And Have 2 siblings1

And are Catholic1

7

The Confidentiality of Alters

A

B

C

A

B

C

A

B

C

A

B

C

D

A A A A

B BB B

C C C C

D

8

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

Risk Mitigating Strategies

Data Agreements and Initial Precautions

Data Management Procedures

Training

10

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

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

12

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.

13

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.

14

Other Ethical Considerations/Questions?

Thoughts for the Group

15