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15.3 Care and handling of research participants 483

participate in research studies. Some participants might struggle with informed con-
sent forms and research project descriptions that might be straightforward for under-
graduates. Patients considering participation of studies of medically-related systems
might have privacy concerns. Families might be limited in their ability to participate
in long sessions. Careful planning and review of proposed protocols, pilot partici-
pants, and planning of supplies and materials are particularly vital for studies involv-
ing these participants.

15.3.7 INTERNATIONAL CONCERNS
We apologize to readers from outside the United States who might have found them-
selves frustrated that the discussions of informed consent and IRBs earlier in this
chapter are overly focused on the conduct of research in the USA, with little attention
paid to matters in other countries. We plead guilty—this chapter is indeed heavily
influenced by our experiences in conducting research in the US.
Although the above discussion may seem somewhat parochial, protecting partici-
pants in research studies is a global concern. A 2015 listing of human research stan-
dards lists dozens of countries with relevant standards (Office for Human Research
Protection, 2017). Many international organizations, such as the World Health
Organization (World Health Organization, 2015), have their own policies, protocols,
and terminologies. For example, outside of the US researchers generally work with
“Research Ethics Committees” instead of “Institutional Review Boards.”
Despite these differences, overall perspectives are generally fairly well aligned.
The European Commission’s policies on protecting human participants cites prec-
edents from the European Charter of Fundamental rights, including the “right to the
integrity of the person,” “respect for private and family life,” “protection of personal
data,” and “Freedom of the Arts and Sciences” (European Commission, 2013). The
differences between these rights and the three pillars of US policy as outlined in
the Belmont Report—beneficence, respect for persons, and justice—lead to subtle
differences in emphasis, but little that would be in substantive disagreement with
American policy. For example, the European Commission’s policy discussion ex-
plicitly covers data protection measures (European Commission, 2013) that would be
familiar to many researchers in the US, even though those matters are not discussed
in the Common Code.
Given these differences, researchers conducting human studies experiments
should always be careful to ensure that they are appropriately versed in the local un-
derstanding of human subjects’ protections and the related regulatory requirements.
This preparation may be particularly important for those conducting research in a
culture with which they are unfamiliar, as misunderstandings may lead to difficulties.
Cultural sensitivity is a particular concern for research projects conducted
by foreigners working in developing countries. Work in the area known as
Information and Communication Technology for Development (ICT4D) often in-
volves the participation of researchers from relatively affluent locales in projects
in developing countries, often with participants who do not share their levels of