Prevent Vulnerable Subjects (Groups) from Hurting in a Questionnaire Method Research

De-identification or Inform Consent Form for teenagers and HIV patients

Background:

While an interim review board (IRB) reviewing a questionnaire research of vulnerable subjects, there should be a lot of debates and arguments around the issue whether we should waive the inform consent form (ICF) or not. Is it better for IRB to approve it with waiving consent, de-identifying and securing the data set instead of signing a consent form? However, the waiving consent form could eliminate the probability of tracking and locating the individual. It would prevent vulnerable subjects from hurting in a questionnaire method research.

Issue:

Find a good mechanism and standard operation procedures to waive ICF for the kind of studies. Discuss and observe these procedures working really. Otherwise, it should take signing a ICF would be a better alternative. 

Material & Discussion

Two samples will be reviewed and discussed. One is “smoking behavior in school teenagers" and the other is “website survey of HIV patients’ quality of life”. Collecting the opinions from sociologists, data-security administrators, privacy experts and principal investigators, this report shows the worries, discomforts, technology risks and possible harms in comparison of benefits coming from these studies. Moreover, the methods of de-identification, risks of re-identification and how to differentiate an anonymous, limited data set from the de-identified will be also presented in this report.