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472 CHAPTER 15 Working with human subjects

process (Schrag, 2015; Cohen and Lynch, 2014). A Jun. 2016 report issued by the
US National Academies, raised multiple concerns about the proposed rule-making,
suggesting that it be withdrawn and that a national commission on human subjects
research be established (National Academies of Sciences, 2016).

15.3.4 INFORMED CONSENT

The notion of informed consent has two parts. “Informed” means that study partici-
pants must understand the reason for conducting the study, the procedures that are
involved, potential risks, and how they can get more information about the study.
Without this information, participants do not have the information necessary to make
a truly meaningful decision as to whether or not they wish to participate. If potential
participants are not told that the use of a specific virtual-reality environment can
occasionally cause nausea, particularly sensitive individuals may agree to partici-
pate without being aware that they might be subjecting themselves to an unpleasant
experience. For these reasons, researchers should strive to clearly provide informa-
tion that is relevant and necessary for appropriate decision-making. Truly informing
potential participants means that the information must be provided in a manner that
is comprehensible. The reason for the study, the procedures being used, and other
details should be provided in a manner that is clear, accessible, and free from profes-
sional jargon.
The second, equally important notion is “consent”: participation in research
studies should be entirely voluntary and free from any implied or implicit coercion.
Potential participants should not be given any reason to believe that a decision not to
participate will lead to repercussions or retaliation, whether in the form of punish-
ment by employers; withholding of medication or the use of a system; or disapproval
from the researcher. Researchers in academic settings should be very careful about
giving students credit for coursework in exchange for their participation in studies:
if an alternative means of earning the credit are not provided, some students may
feel that their grades will suffer if they decline to participate. In such circumstances,
participation would be coerced, not consensual.
In most cases, researchers provide participants with an informed con-
sent document that contains several sections (Office for Human Research
Protections, 1998):

• Institution and Researcher Identification: Who is responsible for the research?
Specifically, which individuals and institutions are conducting the study?
• Contact Information: Who should participants contact if they have questions or
concerns? This section should contain names and contact information for the
researchers in charge of the study, as well as for representatives of the IRB or
other appropriate body.
• Title and Purpose: Why is the study being done?
• Description of Procedures: What will be asked of participants? For HCI studies,
this probably involves using one or more interface variants, discussing goals and
needs, commenting on design proposals, and other related tasks.