Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families
Hazards in the home can cause physical illness, compromise growth and development and lower school performance. Hazards such as mold, radon, tobacco smoke, and household chemicals—occur at all economic levels. Some health hazards such as lead poisoning, asthma, and fatal injuries—occur at disproportionately high rates in poor quality homes of children in low income families. Research is necessary to understand how hazards affect children's health and to develop interventions that can ameliorate or eliminate them. Recognizing the importance of housing health hazard research involving children, this report envisions a research oversight system with researchers, institutional review boards, the federal government and other sponsors, as well as the affected community having a role in ensuring the ethical conduct of this type of research.
The National Academies' Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families was asked to review the challenges and ethical issues in conducting housing related health hazards research in the wake of the Maryland Court of Appeals ruling in the case of Grimes v. Kennedy Krieger Institute leading to substantial controversy and confusion. The ruling highlighted a range of potential ethical concerns such as issues involving adequacy of informed consent, parents' perception of risk, duties of researchers to child subjects and their parents, the role of Institutional Review Boards and the authority of parents to provide permission for their children to participate in research.
Many ethical dilemmas occur because research participants are often poor members of minority groups and have few affordable housing options. Moreover, carrying out research in the home raises particular ethical issues. The committee report offers much needed recommendations and practical guidance for the ethical conduct of this type of research.
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