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Human Subjects Research Tips

The University of Connecticut-Storrs Institutional Review Board (IRB) is responsible for the review of all human participants research conducted at or by the UConn-Storrs Campus, the regional campuses, the School of Law, and the School of Social Work.  The purpose of the IRB is to assure that researchers take appropriate steps to protect the rights and welfare of research participants.

The IRB seeks to create a collaborative relationship with the research community to assure that biomedical and social/behavioral research with human participants be conducted in accordance with Federal and State legal requirements, University policy, and ethical principles such as Respect for Persons, Beneficence, and Justice that serve as the foundation for human participant protection.  These principles require the balancing of risks to subjects against the scientific knowledge to be gained and the potential benefits to subjects and society.

To provide researchers with this foundation, the IRB is launching a get-out-the-tips initiative to provide brief, informative and relevant guidance for completion of protocol submissions and for plans to conduct human participants’ research.  So, onward and Tips Ahoy!

Tip #1, February 2018 – Understand the Difference between Anonymity and Confidentiality

Research studies cannot be both confidential and anonymous.  “Anonymity” means that no one, not even the researcher, will be able to connect the participant’s responses to his or her identity.  Identifiable information should not be collected from research participants unless it is essential to the study protocol.  “Confidentiality” means that the researcher will be able to connect the participant’s responses to his or her identity, but that the information will not be released to anyone else.  Researchers must make every effort to prevent anyone outside of the project from connecting individual subjects with their responses.

For example:  A study is considered to be “anonymous” if it is not collecting specific identifiable information (such as names, social security numbers, etc.) or the study is not collecting information in such a way that the answers that someone gives to the questions could be tied together to allow for identification (this is called deductive disclosure).

Here are some ways to protect confidentiality:

  • Use study codes on data documents (e.g., completed questionnaire) instead of recording identifying information and keep a separate document that links the study code to subjects’ identifying information locked in a separate location and restrict access to this document (e.g., only allowing primary investigators access);
  • Encrypt identifiable data;
  • Remove face sheets containing identifiers (e.g., names and addresses) from survey instruments containing data after receiving from study participants;
  • Properly dispose, destroy, or delete study data / documents;
  • Limit access to identifiable information;
  • Securely store data documents within locked locations or University Servers; and
  • Follow the University’s Confidential Data, Information Technology Policy.