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Submitting
Protocols with Special Populations/Concerns
Special
Population: E-mail / Web
Based
Research
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The number of research projects being
implemented in part or wholly through the Internet has mushroomed
in recent years. The most common concerns about web-based
research for the IRB are recruitment and consent, and protection of
confidentiality of the participants' identity and/or responses. There
are also concerns about studies of interactions between individuals
that are occurring naturally on the web, in chat rooms, bulletin
boards, and other virtual communities.
Web / e-mail consent forms
- Web consent forms should follow
exactly the same format as a
standard informed consent, except there should be a button to
click for “I
accept” with a statement that clicking this button means the
person agrees to participate in the study as described, and the
program will proceed with the study presentation. We don't require
electronic signatures in such cases. It's helpful if possible to allow
for the participant to print a copy of the consent document locally for
their records.
- If recruitment is done via the web/email, but the study
itself is done elsewhere (in person, by phone, or regular mail),
the consent forms can allow for
the participant to either email back
saying that they consent, or make a response directly via the web
page, which can be recorded for the investigator by the program.
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Confidentiaility, and Anonymous On-Line
Surveys
- Many studies are making use of third-party software to
implement online surveys and other forms of data collection. In cases
where sensitive information is being obtained from individuals, the
protocol should be explicit about what software system or vendor is
being used to implement the study (e.g., SurveyMonkey), and explain
that system's privacy protections. For example, are IP addresses of
respondents collected, then destroyed, or not monitored at all?
- It is often the case that data saved on vendor's servers is
not as secure as you might hope, or they might claim. Data should be
removed from the vendor's server as soon after collection as possible;
if there is some need to maintain the data on the remote server, this
should be explained in the protocol.
- On-line surveys can be
administered anonymously given that
the following precautions are taken:
- confirm
that the service provider for the
web-based survey does not, or cannot, collect IP addresses of
respondents in
any way that could be connected with their participation or their data.
- no
questions asking for identifying information, including e-mail address,
should be sought in any of the online surveys.
- ensure that any
code connecting responses at multiple occasions is participant
generated and not tracable back to the participant. These can be
unique, and easily and reliably generated by
participants, and usually involve some combination of parts of family
first
names, letters of hometowns, etc.
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