cal research need to be supplemented with additional safeguards to address the ethical issues that commonly arise in research on housing health hazards involving children. This chapter discusses the typical characteristics of housing health hazards research, highlights common differences between this type of research and biomedical research, and presents the ethical issues raised. Subsequent chapters discuss the committee recommendations for addressing these issues.
In biomedical research, participants generally go to a research institution, such as a hospital, clinic, university, or research office, to be studied. In those settings, researchers have traditionally been viewed as having expertise and power. Role expectations are usually clear: for example, patients come to hospitals and clinics because they need medical care and physicians and other clinicians have expertise. The relationship is inherently unequal because only physicians and other health professionals have the power to order tests and prescribe medicines. In medical institutions, physical arrangements and scheduling generally serve the primary goals of efficiency and convenience for health care providers, with less attention to the difficulties patients experience in obtaining medical care (Cleary, 2003; Nolan, 1998). Patients and their families may experience long waits, indignity, lack of information, and difficulty finding different services in a large medical center (Cleary, 2003); research participants may expect to have similar experiences when participating in research in a medical or other research institution to those encountered when seeking clinical care.
In recent years, the traditional structure of medical institutions and health care has been modified. A historical emphasis on the biomedical aspects of disease has led to complaints that the social and psychological context of illness has been ignored, and many patients have become more active and sought shared decision making with physicians (Peele et al., 2005; Elwyn et al., 2004; Naik et al., 2005; Makoul and Clayman, 2005; Siminoff and Step, 2005). Similarly, in clinical research, some participants and advocacy groups have become more active in setting research priorities and designing and implementing studies (Dresser, 2001). Yet, in most research studies the nature of the data collected and interventions carried out, as well as the scheduling of visits and procedures, are determined primarily by the researchers.
In contrast to most biomedical research, housing health hazards researchers generally enter childrens’ homes to collect data and, in some cases, conduct interventions. Research carried out in the home rather than in a research institution raises distinct ethical issues that researchers must address.