In the absence of explicit guidance, IRBs have had to determine their
own policies that are in linewith 45 CFR 46 and FDA Title 21 regulations.
In the past five years, IRBs have progressed from offering virtually no
guidance on the issue to recognizing the increasing number of research
protocols being submitted that integrate e-technology and hence the
need to develop policies and standards. The two primary issues researchers
must consider when using technology in clinical research
are privacy and informed consent [18].
Themore technology is used, themore vulnerable individuals are to
having their privacy violated.While people are worried about personal
autonomy and privacy, they also voluntarily disclose a great deal of personal
information on social networks and in day-to-day activities conducted
online, like banking and shopping. Using apps, wearable
devices, or any programthat automatically “pushes” data to another online
source makes people increasingly vulnerable to data leaks and
threats of fraud. Froma legal standpoint, online privacy policies consider
whether or not a person has a “reasonable expectation of privacy.”
Federal and state courts have determined that people who publicly
post to Facebook do not a have a reasonable expectation of privacy for
that information [93]. The very nature of social media sites is to share;
once a person knowingly makes a public post to social media, that person
loses any expectation of privacy. Researchers, then, can use that information
like other public records without IRB review. Similarly,
observational research that collects information from public YouTube
videos or Twitter feeds would have little expectation of privacy.