Page 477 -

15.3 Care and handling of research participants 469

the inputs and display—not the faces of the participants. You might be able to shoot
over the users' shoulders to get a fuller view without identifying your participants.
Similarly, audio recordings captured for potential distribution should minimize use
of the participant's voices—record the voices of the research staff if necessary.
Although data minimization may limit risks to participant privacy, the associated
loss of detail may not be acceptable in some circumstances. Studies of the clinical
use of electronic medical records have used audio, video, screen capture, and related
techniques to collect rich records of the technical and interpersonal aspects of the use
of these tools in practice (Asan and Montague, 2013; Weibel et al., 2015). Given the
particularly sensitive nature of medical data, such records should be made carefully,
protected through encryption and appropriate security, and only used by authorized
research staff members.
More generally, data storage and backup choices should also consider participant
privacy. Research data storage should preserve both privacy and availability of data,
particularly given increased mandates for data sharing. Storage on local hard drives
or on digital media stored in locked file cabinets can often be best for protecting pri-
vacy, with somewhat reduced availability. Although cloud-based services may offer
easier data sharing, privacy protections may be weaker. However, cloud providers are
increasingly offering services with higher levels of security and access control. If you
have any concerns, check with your IRB or research office.
Appropriate choices in dissemination—particularly in publishing—can also help
protect participant’s privacy. If you must show people in action, you might consider
using image-manipulation techniques, such as blurring or black bars over the eyes
to hide the identity of the participants. Pictures or videos of the research staff might
be more appropriate for distribution. Finally, you might provide an alternative for
participants who are concerned about their privacy: you might not need video or
audio recordings of every individual in your study. Case studies and interviews with
participants might take care to ensure that descriptions, quotes, and other details are
presented in a manner that removes all materials that might jeopardize participants’
well-being, health, and livelihood.

15.3.3 INSTITUTIONAL REVIEW BOARDS

Universities, hospitals, corporations, and other organizations that conduct research
often have standing committees that review and approve projects involving human
subjects. These IRBs examine proposed studies for appropriate practices, procedures,
goals, and disclosures. By conducting this review prior to the start of research with
human subjects, IRBs protect all of the groups and individuals that may be affected
by the research. Participants are protected by examination of proposed research for
any elements that may be manipulative, coercive, or otherwise abusive. Proposals
that contain any such elements should not be approved by IRBs. Researchers and
institutions benefit from the knowledge that the proposed research has been reviewed
for issues that may cause embarrassment or legal liability. Although this review is
certainly not foolproof, it generally works well in practice.