This page explains the principles involved in securing IRB
permission for data sharing. If you already have this clearance and are
ready to contribute your data to TalkBank (CHILDES, AphasiaBank,
SLABank, etc.), you should follow these instructions on how to actually submit your
data.
IRB Principles
TalkBank members who are interested in
contributing their data need to make sure that they obtain IRB approval
for their study, along with informed consent from individual
participants. There are no standard forms for IRB applications, since
every University or Institute creates their own forms, procedures, and
templates. For the purposes of contributing to TalkBank, the important
thing is to select the appropriate level of access to the data that
participants are being asked to grant. To help you determine this, we
have created an OPTIONS summary for the 9
options that are available. We would recommend that you ask
participants to permit unrestricted access with pseudonymization of the
transcripts (Options 1 and 2). You should include on your form the fact
that participants always have the right to request that parts or all of
the data in which they participate be removed from TalkBank at any time.
Contributions of Archival Data
Often researchers will wish to contribute data collected in projects that have
already been completed. In such cases, it may be difficult or impossible to
contact participants to obtain a new consent form. However, IRBs are allowed
to permit including these data in TalkBank, if certain conditions are met.
The original consent forms should not have exclusionary language such
as "These data will only be made available to Professor XYZ and her laboratory".
If the consent forms says something like "These data will only be made available to
qualified researchers," then inclusion in TalkBank should be allowed, as long as
only qualified researchers are given the necessary password. If the consent form
is still more general, then passwords may not be necessary.
Federal granting agencies stipulate that data collected with federal funds
should be made available to researchers, as long as anonymity is preserved.
Contributions to CHILDES and PhonBank
Although each University and project will have different requirements, contributors
often ask for a generic contribution template form, so here is a sample CHILDES/PhonBank consent form based
roughly on the local format at CMU.
Contributing audio
Researchers often ask about whether they
need to request additional IRB approval for contributing audio data.
The concern is that audio data may be less confidential than transcript
data. However, as long as identifying material is removed from both
transcripts and audio, they do not present additional confidentiality
issues. To do this properly, it is important to replace any last names
in the transcripts with the word "Lastname" with a capital L. Also
addresses or local city names should be replaced with "Address" with a
capital A. These same English words should be used even in other
languages. It is not crucial to replace children's first names unless
they are very unique. For audio deidentfication, we can then use the
occurrences of the terms Lastname and Address in the transcripts to
guide the removal of the names and addresses from the corresponding
segment in the audio track using the SILENCE program in CLAN or hand
silencing in Amadeus Pro. Once this is done, children and others can
only be identified by people who already know them. Because of this,
contribution of audio is equivalent in IRB terms to contribution of
transcripts.
Contributions to AphasiaBank:
Research with subjects with
disabilities requires additional access restriction, such as password
protection. It may also require more complete IRB documentation. In
this regard, researchers working with the AphasiaBank protocol will find
these additional IRB materials useful:
To protect subject confidentiality, all research
contributions to FluencyBank are restricted and require password to
access. We suggest that new projects use a graduated consent form
developed at the University of Maryland, that allows participants to
specify use of video, audio-only, or transcript-only in contributed
data.
For projects underway, or recently completed, or longitudinal
projects in which PIs would like to have an ongoing relationship before
making a contribution request of subjects, we have a
sample post-hoc consent form from the University of
Maryland.
For completed projects that have used video without permission to share the
video, we will work with
you to extract the audio tracks from your video files. (Please see Contributing
audio, above, for reasons why this may not require additional IRB
consideration). Please contact Brian MacWhinney or Nan Bernstein Ratner
to determine how best to handle your data.