ABSTRACT
Research ethics protections should be a major consideration in the conduct of
community health studies in potentially politically charged research settings,
such as nuclear weapons experiments, production activities and related health
research on affected populations. Health assessments in these settings typically
have higher levels of scientific uncertainty and “grey areas” in data modeling
and data interpretation. Problems and complaints of research bias, incomplete
assessments and statistical manipulations easily can surround studies with scien-
tific uncertainty. Participatory research approaches, ethics guidelines and other
field evidence can become critical resources for improving ethical approaches to
these communities of study. The design and conduct of health studies around
nuclear weapons facilities lacked substantial ethical guidance for protecting com-
munities from negative research experiences and for ensuring community value
and fairness in study designs, outcomes and publicity. Community consultation
was developed for health studies but mostly for providing advice to researchers.
More progressive models of community engagement, such as community-based
research partnerships, were not considered. Additionally, the need to obtain
community agreement or approval in the conduct of community health studies is a
key area of development for the purposes of maximizing benefits and minimizing
harm in these settings. Such ethical advice was not incorporated into the research
approaches used around nuclear weapons facilities. In this chapter, I address
ethical concerns related to community health research by detailing the advice of
research ethics guidelines and new research approaches for community studies
for their value in improving the ethical challenges that are dramatically expressed
within the community and academic narratives. Advice from research ethics
professionals who are trained in research ethics protections for communities of
study could have helped to improve the beneficence of the health studies that
were conducted. In this chapter the experiences of community members, health
organizers, and researchers captured in the narratives here broaden an under-
standing of beneficence and nonmaleficence in research related to nuclear
weapons activities. The narratives point to considerable work to be done in
increasing our moral progress with these research ethics issues.