Ethical Considerations for Research on Housing-Related Health Hazards Involving Children (2005) / Chapter Skim
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1 Introduction
1 Introduction
Pages 13-23
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From page 13... ...
. Overcrowding, impure drinking water, faulty sanitation, and poor construction allowed the transmission of tuberculosis, diphtheria, cholera, and other communicable diseases in crowded tenements (American Public Health Association, 1938)
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From page 14... ...
However, the particular characteristics of housing health hazards research introduce ethical issues not fully addressed by the current regulations: those additional issues are the focus of this report. Although some of the same characteristics are present in other types of research, and the additional protections proposed could apply in these cases, the focus of this report is specifically on housing health hazards research.
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From page 15... ...
Housing health hazards research involving children raises particular ethical challenges because it is usually conducted in homes.1 A home setting 1In some cases, research is conducted in vacant housing.
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In addition, because children in low-income families are more likely to live in poor-quality housing and therefore are at increased risk for many housing health hazards, and to generate the necessary knowledge to understand and ameliorate these risks, such research often involves economically and educationally disadvantaged children. There are a number of ethical concerns about targeting such children for research.
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For housing health hazards research, the mechanisms to translate effective interventions into benefits for those affected are more limited than for
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The court also discussed additional issues, such as the acceptable level of risk for children in research on housing health hazards; discordant perceptions of risk and benefit among families, investigators, and institutional review boards (IRBs) ; problems with informed consent in vulnerable populations; research oversight; and reporting of results from research tests to families.
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From page 19... ...
The court ruling challenged researchers, sponsors, and IRBs to rethink important ethical issues concerning research on housing health hazards involving children. The decision suggests stricter standards for limiting the risk to children enrolled in research, calls attention to the need to better protect vulnerable persons, questions the adequacy of IRB review, and calls for broader informed consent discussions.
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From page 20... ...
Kennedy Krieger, ethical underpinnings of children's research, informed consent, and lessons from the behavioral and social sciences. The committee also requested presentations by researchers who conduct housing health hazards research; scholars from bioethics, law, and social sciences who have studied issues pertinent to the committee's charge; representatives of the communities in which research has taken place; and parents of research subjects.
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From page 21... ...
We paid special attention to the IOM committee's deliberations about the crucial issues of assessment of the benefits and risks of research and informed permission from parents and assent from children in research. A topic that is particularly important for housing health hazards research is the interpretation of such key regulatory terms as "minor increase over minimal risk" and "disorder or condition." As detailed in Chapter 8, we deliberated at length regarding the IOM committee's recommendations related to research that defines disorder or condition based on social characteristics.
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From page 22... ...
This committee concluded that the issue of adequate expertise and information is even more pertinent for the review of research on housing health hazards involving children than for other types of research with children. In housing health hazards research, it is even more important for IRBs to understand family and community perspectives because researchers enter children's homes and because of the many vulnerabilities of children enrolled in such research.
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From page 23... ...
Chapter 4 analyzes in more detail how housing health hazards research is different than traditional biomedical research and the unique ethical issues raised by these differences. Chapters 5-8 present and discuss the committee's recommendations to ensure that housing health hazards research is designed and conducted so that it is consistent with the ethical principles of respect for persons, beneficence, and justice.
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