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468 CHAPTER 15 Working with human subjects

INFORMED CONSENT: ORIGINS AND CONTROVERSIES—CONT'D
The US Public Health Service Syphilis Study at Tuskegee involved
hundreds of black men with syphilis over 40 years. Although they were
told that they were being treated, no treatment was in fact given, and efforts
were actively made to prevent participants from getting treatment (Centers
for Disease Control and Prevention, 2007). Several other studies in the US
involving administration of drugs or treatment without consent were conducted
in the US after the end of World War II (Pellegrino, 1997). More recently, drug
trials conducted by Western companies in countries such as India have raised
concerns about the nature of informed consent across such cultural and financial
divides (Sharma, 2005).
The costs associated with these studies are not limited to the substantial
harm inflicted upon the subjects. These unethical experiments reflect poorly on
science and scientists in general, harming public trust and increasing reluctance
to participate. One study of both white and black residents of Detroit found that
black residents were more likely to have heard of the Tuskegee experiments.
They were also more likely to be distrustful of researchers and less likely to
participate in research (Jones, 1993; Shavers et al., 2000).

15.3.2 PROTECTING PRIVACY
Participants should also be assured that their privacy will be protected. Researchers
should obtain consent for the collection and storage of personal information; limit
the information collected to that which is necessary; identify the uses that will be
made of any information; limit the use, disclosure, and retention of the informa-
tion; securely protect any information; disclose policies and procedures; provide a
means for addressing concerns regarding compliance with information practices;
and be accountable for those practices. Patrick provides a set of more than 30 ques-
tions suitable for addressing adequacy of practices in each of these areas (Patrick,
2007b).
The use of photography and video or audio recording presents special challenges
regarding the privacy of participants. Photos, videos, and audio recordings can be
very useful tools for illustrating the use of an interface, but they can also unambigu-
ously identify individuals as having participated in a research project. There are sev-
eral steps that you should take in any project before you start the shutters snapping
or cameras rolling. You should clearly tell participants what you are recording and
why. If you are going to consider using images of participants in any publications
or reports, participants should be fully informed of this possibility. These practices
should be mentioned in your informed consent forms (Section 15.3.4) and discussed
with participants. If you are video recording, you might consider recording a portion
of the discussion, taking care to include footage of the participants explicitly agree-
ing to be video recorded. You should plan your photos or videos carefully: if you are
really interested in what is going on with the interface, take pictures and video of