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06 Network Study Design: Ethical Considerations and Safeguards (2016)

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06 Network Study Design: Ethical Considerations and Safeguards (2016)

  1. 1. Network Study Design: Ethical Considerations and Safeguards Duke Network Analysis Center Social Networks and Health 18 May 2016
  2. 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 1
  3. 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. 2
  4. 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. 3
  5. 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 4
  6. 6. Privacy Challenges Associated with Relational Data Deductive Disclosure The Confidentiality of Alters 5
  7. 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. 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. 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. 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. 11. Risk Mitigating Strategies Data Agreements and Initial Precautions Data Management Procedures Training 10
  12. 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. 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 12
  14. 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. 13
  15. 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. 14
  16. 16. Other Ethical Considerations/Questions? Thoughts for the Group 15

Editor's Notes

  • The Belmont Report was drafted, in part, in response to landmark social science studies such as Milgram's Obedience to Authority study, Zimbardo's Stanford Prison Experiment, and Humphreys's Tearoom Trade study that demonstrated social and behavioral research can also carry risks of harm to participants/respondents. In particular, these studies highlighted the potential risks social science studies can have for psychological well-being , violations of autonomy and privacy, and reputational damage if safeguards are not taken.
  • The possibility of deductive disclosure can not only pose potential privacy risks but also raise ethical questions, particularly in studies examining suicidal ideation or abuse.

    In addition, the tie structure itself can be a form of deductive disclosure (e.g., superior/subordinate relationships in organizational departments). In these cases, simply anonymizing the nodes may still leave employees at risk of adverse action.
  • The tracking of privacy information is becoming its own research area (e.g., DataMap and AboutMyInfo), (http://thedatamap.org/) and http://aboutmyinfo.org/ respectively.

    Federal Certificate of Confidentiality: Protects subjects against data subpoenas and prosecution on the basis of research data.
  • Local Network/Ego-network studies do not need identified alters. Local networks can be constructed by asking participants to list attributes of their alters, and characteristics of their alters. Participants can construct a two step ego-network by asking them to list connections between their alters. Note, alters can remain anonymous in this type of study because participants can use letters or numbers to refer to their friends when listing their attributes and the types of relationship between ego and alter. These studies can examine how the number of alters or the effect of risky relationships on pathogen spread.
  • To identify the implications of the global structure of the network, participants must be able to name common alters, meaning during data collection and cleaning we must retain not only the identities of the participants but also their alters.

    For research questions examining the diffusion potential of a setting, this type of analysis is necessary. For example, the two networks imply two different diffusion potentials. Network 1, for example, requires more steps to diffuse a given disease (within 2 steps a pathogen could spread to 7/8ths of the network). Network 1’s structure would also imply a targeted intervention strategy, whereas network 2 has more redundant ties and would thus imply a more general intervention strategy.
  • Waivers for consent for secondary subjects are possible if the meet the following conditions:
    1) Minimal Risk (We can ensure this through good data practices and research design)?
    2) Is it practicable to conduct the research without the waiver (not for Global Level Questions)?
    3) Will waiving or altering informed consent adversely affect the subjects’ rights and welfare?
    4) Will pertienent be provided to subjects later, if appropriate?
  • How it will be collected includes the informed consent form or other consent agreements, guaranteeing the right of participants to not participate. the stimulus, debriefing where necessary (e.g., work on social support networks).

    In studies collecting data based on online artifacts, terms of service agreements are an important additional consideration that IRB may not catch.
  • By thinking like a PI, I mean not only making smart safe data management choices but also communicating clearly expectations to other graduate students assisting in data collection.

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