Research Data Management: Ethical Issues - Sensitive Data

Personal Health Information and HIPAA:

• ACOM Institutional Review Board (IRB)

  Doing research with human subjects is a complicated matter.  Often times, if you are working with human subjects, your work will need to be overseen by an Institutional Review Board (IRB). The IRB’s vision is to protect human research participants in medical and non-medical endeavors.  Typically, if you decide to work with human subjects, it is a good idea to contact your IRB to see if they need to be involved in your work or not.

• HIPAA Privacy Rule

  HIPAA is the US legislation that protects medical or healthcare data; any medical research involving human subjects should be HIPAA compliant.  Consult the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule Information for Researchers here for info on HIPAA.  

Data Sharing Sensitive Data

In order to ethically share confidential data, one must do the following:

• Obtain informed consent by research participants for data sharing (e.g. in an open repository or archive)
• Try to anonymize the data the best that you can through removing HIPAA identifiers from your dataset
• Add restrictions to your data usage

• ICPSR

  See the ICPSR for recommendations on informed consent language guidelines for the creation of data sharing consent form templates.

Software for Sensitive Data

There are a couple of software options that are designed to collect sensitive data in a reliable and secure way.  ACOM has an  institutional license to Qualtrics, a software that is safe to store and collect sensitive data.

Qualtrics

• An online survey tool with the ability to send and track survey invitations and reminders. It can also generate in-depth reports, statistics, and can export data for various kinds of analysis.