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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children
Finally, justice addresses the questions of who should receive the benefits of research and who should bear its burden. An injustice occurs if someone is denied a benefit to which he or she is entitled or when a burden is unduly imposed. The principle of justice is typically discussed in the context of equitable selection of participants, so that no group receives a disproportionate share of the benefits or burdens of research; it has generally received less attention than the other two ethical principles. However, it is particularly salient in the context of housing health hazards research.
The distributive paradigm of justice may be challenged when considered in the context of communities that lack economic, social, and political power. Residents of these communities may have experienced a history of racism, classism, segregation, unequal access to quality health care, discrimination, and past research abuses. The resultant pervasiveness of distrust toward researchers and research institutions among many individuals and communities in which this research will take place is one aspect of the difficulty in applying the principle of justice. Community residents may believe that changes in housing and economic policies to improve low-income housing are needed, rather than more research. In addition, as discussed in Chapter 4, community residents may have a different view than researchers regarding what constitutes a risk and whether a particular research project is worthwhile.
Some ethicists have suggested using a relationship paradigm that acknowledges the notion that an individual is situated in his or her social context, environment, or community to support thinking about complex ethical issues in underserved or vulnerable communities (King et al., 1999; Fisher, 1997). A relational approach to ethical decision making draws attention to complex social, cultural, and political contextual factors. This paradigm acknowledges that researchers and participants may differ in their assessment of research risks and benefits and values each perspective. Researchers are encouraged to engage participants and community residents—and community residents are encouraged to proactively engage researchers—as partners in designing research that meets the needs and addresses the values of all stakeholders. In this paradigm, justice evolves into a principle that goes beyond the issues of participant selection to a principle that is related to past, present, and future distributions of power (King et al., 1999; Institute of Medicine, 1999). This shift reflects the view that research is part of a broader societal context and that the conduct of research often mirrors a system in which power is unequally and perhaps unfairly distributed.
Through discussion with potential and actual research participants, the respective views of researchers and community residents can be examined and a research plan can be constructed that accommodates the views and values of prospective participants, their families, and their communities