Data collection ethics

Matt Bhagat-Conway

Why collect data

• Sometimes Census data and existing surveys aren’t enough, and you need to collect your own data
• A survey is one of the most common ways to do this

Human subjects research ethics

• Surveys are answered by humans
• In many case this means they are considered human subjects research
• Academia has a bad history with human subjects research
  • Medical experimentation, Stanford Prison Experiment, etc.

Human subjects research ethics

• Since the goal of research is not to benefit participants directly, incentives to protect respondents may not be aligned with research goals
• If you’re at a university, anything considered human subjects research must be reviewed by the Institutional Review Board
• In professional practice, there may or may not be ethical review committees

Risks to survey respondents

• Most often: breach of confidentiality
  • Severity depends on the content of the survey
  • Be careful where you keep your survey data
  • In some cases, you may make de-identified data publicly available, or occasionally even identified data - this is okay as long as respondents provide informed consent
• Mental discomfort
• Legal action

The informed consent process

• Subjects have a right to know how their data will be used, distributed, and stored
• Surveys generally start with an informed consent document–clear language explaining the study, its purpose, what will be done with the data, and who to contact with concerns
  • Often also includes time estimates and information about incentives

IRB approval process

• Submit online through the IRBIS system
• Fill out a form specific to the type of research you’re doing
• Wait (generally 1-2 weeks)
• Generally, respond to comments from IRB and resubmit

What are human subjects?

• A living individual about whom an investigator conducting research obtains
  • data through intervention or interaction with the individual, or
  • identifiable private information.

source

What is research?

• Research contributes to generalizable knowledge.
• Research is designed in advance.
• Research utilizes a systematic approach.

source

I am not the IRB

• If you’re doing anything that’s remotely unclear whether it’s human subjects research, it’s a good idea to be in touch with the IRB
• The UNC IRB has a specific approval type “Not Human Subjects Research” where you describe a research project that you don’t believe will be human subjects, and they approve it
  • This gives you a paper trail if anyone ever asks
  • Often used when conducting a survey that does not ask personal questions (e.g. a survey of planners)

Exempt reviews

• Most planning human subjects research projects are reviewed by the IRB, then “exempt from continuing review”
• There are several other IRB levels, based on the risk the subjects are exposed to and who the subjects are, but these are rare in planning

CITI training

• Everyone needs to take the CITI training
• Link on Canvas
• No credit, but required to pass this class