Privacy Concerns

Often when we conduct surveys we are asking our subjects to trust us with information that is personal, ranging from demographic information about themselves to opinions or information about activities that they may not wish others to know. Even a piece of information that appears harmless could cause someone great distress if it was revealed. We have a great responsibility to protect the identities of respondents and the information they provide. Especially in a small community or group it may be possible to ascertain a respondent's identity with very little information.

There are federal regulations in place that help us to understand how to protect private information.

• Family Educational Rights and Privacy Act (FERPA)
  These are the federal regulations that protects the privacy of students and parents.

• Health Insurance Portability and Accountability Act of 1996 (HIPAA, Title II)
  This is the law that addresses the privacy and security of health records and individually identifiable health-related information.

When submitting your survey for approval or exemption, our local Institutional Review Board will discuss any concerns they may have about how you will ensure the privacy of your subjects.

Here are some additional guidelines to follow:

• Don't collect names or ID's unless you need them.

• Collect only the demographic information you need to understand your data.

• Keep collected data secure.

  • Electronic files should be kept on a secure server or on a personal computer that can be electronically locked and physically locked down.

  • Do not transport data on a laptop that could be stolen.

  • Paper files and completed paper surveys should be kept in a locked cabinet.

  • Password-protect your electronic data files, if possible.

  • Limit the sending of data files electronically through email.

• If you have promised to destroy data after the project is completed, reformat and physically destroy electronic media (flash drives, CD's, DVD's, etc.), and shred paper, including backups.

• Make a special review of your report to consider whether any statements or summaries could reveal information about individuals or small groups.

• If you will be reporting individual responses to open-ended questions, be sure to delete or modify any information that could reveal the respondent's identity or the identity of someone discussed.

In general, handle the data as though it contains your own personal, private information.