4
Characteristics of Housing Health Hazards Research

The primary goal of all research, including housing health hazards research, is to gain generalizable knowledge. The risk or inconvenience to participants that may be present in any type of research needs to be balanced against the potential benefits of the knowledge gained. Although housing health hazard research and other types of research share some general research characteristics, they also differ in several important ways. One difference is that the usual setting for housing health hazards research is in homes and communities rather than in medical institutions. Another difference is that some housing health hazards studies primarily enroll children from economically disadvantaged communities. More broadly, the nature of risks and benefits in housing health hazards research often differ from those typically found in biomedical, social and behavioral, and public health research. In addition, unlike biomedical research, there are few market incentives to translate housing health hazards research into improved housing. Although other types of research, including some biomedical research, are also conducted in homes and communities or target economically disadvantaged populations, the focus of this report is on housing health hazards research. The committee recognizes, however, that its recommendations would apply to other types of research with similar characteristics.

The frequent differences between housing health hazards research and other types of research have important ethical implications for the design and oversight of research and the protection of children in research. Biomedical research has been the prototype of research involving humans, and the relevant federal research regulations were designed with it in mind. However, regulations and ethical guidelines that were crafted for biomedi-



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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 4 Characteristics of Housing Health Hazards Research The primary goal of all research, including housing health hazards research, is to gain generalizable knowledge. The risk or inconvenience to participants that may be present in any type of research needs to be balanced against the potential benefits of the knowledge gained. Although housing health hazard research and other types of research share some general research characteristics, they also differ in several important ways. One difference is that the usual setting for housing health hazards research is in homes and communities rather than in medical institutions. Another difference is that some housing health hazards studies primarily enroll children from economically disadvantaged communities. More broadly, the nature of risks and benefits in housing health hazards research often differ from those typically found in biomedical, social and behavioral, and public health research. In addition, unlike biomedical research, there are few market incentives to translate housing health hazards research into improved housing. Although other types of research, including some biomedical research, are also conducted in homes and communities or target economically disadvantaged populations, the focus of this report is on housing health hazards research. The committee recognizes, however, that its recommendations would apply to other types of research with similar characteristics. The frequent differences between housing health hazards research and other types of research have important ethical implications for the design and oversight of research and the protection of children in research. Biomedical research has been the prototype of research involving humans, and the relevant federal research regulations were designed with it in mind. However, regulations and ethical guidelines that were crafted for biomedi-

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 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. THE SETTING 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.

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children The Sanctity of the Home When researchers enter childrens’ homes to carry out research, expectations and constraints may be strikingly different than when research is carried out in a medical setting.1 Researchers are guests. A home provides not only shelter, but also “a refuge from danger, humiliation, worldly stress, and the struggle for recognition” (Noddings, 2002, p. 151). No one may enter a home without permission or an invitation. In his or her home, a person can control things. The home is therefore different from the workplace or public places, where an employer or society can set rules, procedures, and restrictions on behavior and appearance (Rybczynski, 1986). In fact, the adage that a “man’s house is his castle” is one of the oldest and most deeply rooted principles in Anglo-American legal history and is “part of the fabric of the Fourth Amendment,” which protects individuals’ homes and property from unreasonable searches and seizures by the government (Hafetz, 2001, p. 175). Although the courts have lessened the protection of privacy in other places, such as cars, airports, or schools, the home has retained its zone of privacy in search and seizure law (Hafetz, 2001). Indeed, the jurisprudence of protecting an individual’s privacy has grown beyond that of Fourth Amendment search and seizure law, which protects private property, to include protections from government intrusions into the exercise of certain individual liberties, such as marriage, reproductive decisions, and childrearing practices (Hafetz, 2001). Recently, for example, the Supreme Court struck down a Texas anti-sodomy law on the ground that the law violated an individual’s right to privacy guaranteed by the liberty interests protected by the Fourteenth Amendment. The court held that under the Constitution, liberty “protects the person from unwarranted government intrusions into a dwelling or other private places” (Whitman, 2004, p. 1214, quoting 123 S. Ct 2472, 2475 (2003)). The home represents more than just a negative right to keep people away and to be free of control by others. It also offers a place where people can express their own values, which may include religious beliefs, cultural norms, and family expectations. People can arrange their homes in ways that a “room conveys the character of its owner” (Rybczynski, 1986, p. 43). A home also is where special, intimate relationships flourish, including marital relationships and relationships with children. In these relationships, people function both as individuals and as members of a family or household unit. 1   Although there may be boundary issues in the relationship between other professionals and their clients, the focus here is on the relationship between researchers and those enrolled in research.

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Raising children is an activity in which the home is particularly important. Within the home, parents “shape the character and personality of the child” (Noddings, 2002, p. 63). Parents or guardians have control over the children’s basic needs, discipline, education, and religious upbringing. In the United States, there is a presumption that parental values and decisions should be given great deference. Parents have a right to raise their children in the way that they view as most appropriate, without interference from other people or the government, as long as their actions fall within a broad range of socially permissible options (Mnookin and Weisberg, 2000). Ethical Issues in Entering a Home When people invite someone into their home, they reveal many things about themselves that would not otherwise be apparent and that they might not reveal in other contexts. Researchers who enter homes to conduct their research may observe things that they would not see in medical settings, that may not be included in the data collection protocol, and that may have little to do with the topic of the research. Observations might include the physical environment, activities within the home, and interactions among persons in or around the home. Such observations will be particularly far ranging if the researchers physically inspect the home as part of the research project. As we discuss in more detail in Chapter 7, researchers may observe conditions or actions that may pose some risk to children. For example, researchers may note serious physical hazards to a child, such as a lack of window guards or access to chemical products, which may or may not be part of the research. In addition, the appearance of the child may raise concerns about physical injuries or neglect. When people visit a home, there are social expectations about what is acceptable behavior. People who are invited into a home are expected to be sensitive to and respectful of the host’s customs and values. For example, visitors are expected to comply with the rules of the home, such as taking off shoes or not smoking (Rybczynski, 1986, p. 74-75). At the same time, within a home “social conventions could be set aside or at least loosened” (Rybczynski, 1986, p. 110). Generally it would be considered an affront for others to criticize or give advice about someone’s home, unless they are asked to do so. Even relatives may be expected to refrain from disputing choices that parents have made about their home and children. Social roles for strangers in a home are usually clear. Salespeople, repair persons, or workers installing an appliance are there for certain purposes only. They do not have an open-ended invitation to give advice on other topics. When researchers enter a home, their relationship with participant families may be complicated, and there may be conflicts in their roles and ethical obligations. If the researcher makes only one visit to administer a

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children questionnaire, the expectations and role are similar to that of a plumber or repairman carrying out a single task. However, if a research project follows children over time, the relationship may become ambiguous. First, the research staff may give the parents small gifts of appreciation, such as T-shirts and coffee mugs. These gifts can be seen as similar to gifts that a friend or acquaintance may bring when invited to one’s home. In return, the host may offer coffee or other refreshment. These social rituals may transform a working relationship between strangers into a more personal one. Second, research staff may reside in the same community as the families participating in the research and may even know some of them prior to the study. Such prior relationships will complicate the research relationship. Staff must be trained on privacy and confidentiality, and consideration must be given to staff’s prior relationship with families in determining which staff to send to homes to minimize possible breaches of privacy or confidentiality. Third, the research staff may observe behaviors or other information about other residents in the household other than the children who are the subjects of the study or their parents. Finally, researchers differ from other visitors to the home because they have special expertise about housing health hazards and have opportunities while in the home to identify hazards. These features of the relationship may create role-specific obligations for researchers and their staff. Researchers may be in a unique position to identify and help ameliorate hazards. If they do not act, a unique opportunity to prevent harm may be lost. In addition, if researchers studying housing hazards fail to point them out, parents may infer that there are none in their home. If the researcher’s role is ambiguous or unclear, there may be both advantages and disadvantages. A more personal relationship between researchers and parents may make participation more enjoyable and may also enhance the quality of research through more complete data collection, but there may also be misunderstandings and dilemmas. Parents may not fully understand what researchers will and will not do, particularly with regard to housing hazards that are not the focus of the study. Furthermore, they may not appreciate that researchers will observe information about them and their home that is not part of the research protocol and, in some circumstances, may act on that information. It is important that researchers anticipate possible misunderstandings about their role and take steps to correct them. Researchers need to think through these issues when they design their projects and discuss them with parents during the informed consent process. In addition, investigators need to ensure that their front-line staff, who enter childrens’ homes, understand their role as members of the research team, how that role differs from the role of neighbor or friend, and how they should respond when they make observations about risks that are not part of the protocol. These issues are discussed in more detail in Chapter 7.

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children VULNERABLE POPULATIONS As discussed in Chapter 2, children often are at greater risk than adults for housing health hazards because they are unable to protect themselves in hazardous environments. Small children may have greater exposures because they tend to play on the floor, where they may be exposed to dust or dirt, and because of normal exploratory behavior, which includes putting objects in their mouths. Research to identify, characterize, and ameliorate these hazards is needed to address this disproportionate prevalence. Because children are not merely “little adults,” studies conducted with adults often have little application to them. Their smaller size and immature systems may lead to greater effects from exposures (Bearer, 1995). Children in housing health hazards research are especially vulnerable for multiple reasons. First, as recognized in the federal regulations, they are vulnerable because they are children. Younger children cannot consent for themselves; their parents or guardians must give permission for their enrollment in research (see Chapter 6 for a discussion of informed consent). Whenever research participants cannot give informed consent, ethical concerns arise because they have not consented to any risks involved in the research, particularly if the project does not offer the prospect of direct benefit. The target population for some housing health hazards research raises the additional vulnerabilities of poverty and minority status. As discussed in previous chapters, children in low-income families often live in poor-quality housing that is associated with higher than average rates of some negative health outcomes. These children are also more likely to attend low-quality schools, belong to ethnic groups that historically have suffered discrimination and stigma, and have limited housing alternatives. Furthermore, children in low-income families may lack health insurance and access to health care. Their parents may be poorly educated and may not understand the health hazards present in their home or be able to easily access information about such hazards. Moreover, the power differential between low-income parents and investigators may affect the voluntary nature of informed consent, and incentives for participation may unduly influence parents’ decision to allow their children to be enrolled in research. Ethical Issues Given these concerns, what might be persuasive ethical arguments for focusing housing health hazards research on children in low-income families who are at increased risk for the hazards? Efficiency in carrying out the research would not be an acceptable justification. The majority of housing health hazards research reviewed by the committee primarily enrolled children in low-income families. If research could be practicably carried out

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children with children from all socioeconomic backgrounds who experience a given hazard, it would be ethically preferable to do so. For example, a cross-sectional lead prevalence study used a representative sample of all housing units and a project in the Cincinnati metropolitan area designed to test the safety and efficacy of lead hazard controls and injury controls recruited families from various socioeconomic backgrounds and from various racial and ethnic groups (Jacobs et al., 2002; Eskenazi et al., 2005). Historically, the approach to vulnerable populations has been to exclude them from research. While this protects them from harm, it also may result in useful research not being conducted and therefore deprive the vulnerable population from the knowledge gained and potential benefits from research. As research has been increasingly viewed as an activity that not only generates new knowledge but also provides potential benefits as well as possible risks, there has been a trend to try to include vulnerable populations in research when appropriate, while requiring extra scrutiny and additional safeguards to ensure that they are adequately protected (National Bioethics Advisory Committee, 2001); this committee shares that view. Housing health hazards research sometimes targets children in low-income families because it is necessary to include these children in order to adequately understand the hazard or how to ameliorate it. Research may be designed to document the relationship between housing conditions and health, to better understand the mechanisms by which housing affects health, or to develop interventions to address housing hazards. Such studies are justified when they are designed to improve the very circumstances that have led to higher risks in children’s daily lives (Wendler and Emanuel, 2004). Furthermore, it is necessary to study these children in order to gain scientific knowledge that might lead to improvements in housing. In biomedical research, subjecting sick children to a level of risk slightly greater than well children is justified on the basis of learning about their illness and ultimately affecting it. In the case of housing health hazards, which are exacerbated by poverty or housing conditions, it is necessary to study children in that situation to identify specific ways of affecting it. The generalizability to children in low-income families of studies of children living in hazard-free housing, or even substantially different housing, would be questionable. For example, interventions to ameliorate risk that are effective in higher income households may not be effective in low-income households. The household triggers for asthma differ in low-income and higher income households, and interventions designed for one group might not translate to the other. Similarly, the results of an intervention designed to identify effective ways of addressing housing hazards may be muted when subjects live in widely different housing with varying hazards. Researchers are trying to ameliorate the circumstances of living in poor-

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children quality housing, not use this circumstance to justify exposing children to risks for other purposes. The research therefore expresses the view that these conditions are unacceptable; not doing the research would limit the potential to change the condition. In Grimes v. Kennedy Krieger Institute, the court and subsequent commentators raised the issue of whether the investigators simply studied children who happened to live in houses known to contain lead paint, or whether the research methods amounted to the investigators’ placing these children in houses or encouraging them to remain in houses known to contain lead paint. If the latter is the case, then there are ethical concerns about complicity or “dirty hands,” even if the research is designed to find ways to ameliorate the children’s unfortunate circumstances (Wendler and Emanuel, 2004). Even when the selection of primarily children in low-income families is justified, disproportionate enrollment of these children leads to concerns about or the perception of inequitable selection of subjects and informed consent. The Belmont Report (National Commission, 1978) cautions that an injustice occurs when research participants are unduly burdened or exploited for the benefit of others. Historically, the burdens of serving as research participants have fallen largely on poor patients, while the benefits of improved medical care have flowed primarily to those who are can afford health insurance and health care. For African Americans, the notorious Tuskegee project symbolizes the possibility that research may exploit rather than benefit them (Freimuth et al., 2001; Corbie-Smith et al., 1999; Fairchild and Bayer, 1999). In the context of research involving children, the ethical concern is that vulnerable children may be being used as a means to benefit other children. Addressing the Ethical Issues One useful approach to these complex dilemmas is for researchers to discuss a proposed study with representatives of the community in which the study will be carried out (Krieger et al., 2002b; Israel et al., 1998). If the researchers cannot persuade community representatives that the study is of vital importance, has acceptable risk, and is likely to provide benefit in the long run, they need to seriously reconsider the study’s goals and design (see Chapter 5). This may include the adoption of innovative research designs (see Chapter 7). Community involvement can also increase the likelihood that research will be used to benefit the intended community. Approval from the community, while beneficial, is not sufficient. As we suggest later in the report, studies with vulnerable populations also should meet additional criteria to safeguard children in housing health hazards research. When subjects have multiple vulnerabilities, investigators and

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children institutional review boards must provide safeguards to ensure that the balance of risks to benefits in the research are acceptable and that parents are able to make informed and voluntary decisions about their children’s enrollment in research (National Bioethics Advisory Commission, 2001; Institute of Medicine, 2004; see Chapter 6). Ethical concerns about targeting low-income populations are perhaps most pronounced when research involves more than minimal risk and no prospect of direct benefit. In such cases, researchers and IRBs should ensure that there is a body of evidence that establishes a connection to the health hazard under study and should engage in meaningful and ongoing dialogue with the community. RISKS AND BENEFITS Housing health hazards research often differs from biomedical and other types of research in regard to the type and perception of risk and the mechanisms to implement the results of the research. We illustrate these differences with a comparison of housing health hazards and biomedical research. The Nature of Risk Biomedical research often involves invasive medical procedures or testing of new drugs. The risks of such research include physically adverse events, which may be serious or even life-threatening. The risks of the research intervention must be distinguished from the risks of the participant’s disease or condition. For example, suppose a patient with cancer participates in a research project that studies the out-of-pocket costs of care: the study intervention is gathering information about expenses. This intervention presents minimal risk. The participant may suffer serious health problems or even die if the cancer spreads, but the researcher is not held responsible for the adverse health outcome because it was not caused by the research intervention. In contrast, research interventions on housing health hazards usually do not pose more than minimal physical risks to children. Generally such research involves questionnaires, observations of children’s activities and the physical characteristics of their homes, measurements of air and dust samples from homes, and measurements involving the urine, hair, or blood specimens from children. If the research involves an intervention, it is typically education or changes to the home environment. Interventions in housing health hazards research do not typically pose physical risks to children, such as might be the case with an intervention testing a new drug. However, children in the study may still be at risk for adverse health outcomes be-

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children cause they live in housing with health hazards; these risks would be present whether or not the children were involved in a research study. Therapeutic Misconception Biomedical research has produced advances in therapies that have benefited many people. Over the past 20 years, new treatments for cancer, heart attacks, AIDS, and organ transplantation have resulted in dramatic clinical improvements. Perhaps as a result, Americans tend to support biomedical research, and funding for the National Institutes of Health has doubled in the past decade. Moreover, public and disease advocacy groups view clinical research as access to new therapies. Participation in biomedical research is generally no longer viewed as “being a guinea pig,” but instead is often viewed by both physicians and patients as an opportunity to receive new treatments (National Bioethics Advisory Commission, 2001; Dresser, 2001). Thus, there is widespread support for developing new tests or therapies through clinical research. Parents may overestimate the benefits of clinical research. Participants often believe that clinical research will benefit them personally, although the goal of Phase 1 clinical trials is to establish safety and dosing, not to test effectiveness. This widespread mistaken belief that clinical research is intended to provide direct benefits to participants has been termed the therapeutic misconception (Appelbaum, 1987; Lidz and Appelbaum, 2002). A similar misconception can exist in housing health hazards research. In the case of housing health hazards, parents may also mistakenly believe that participation in the research will eliminate or reduce health hazards in their homes. Long-Term Benefits of Research For biomedical research, the U.S. health care system has mechanisms by which research discoveries may be translated into clinical benefits for the patients who need them. For example, discoverers of a new test or drug have financial incentives to translate their research into marketable products. After drug manufacturers gain government approval for new drugs, the health insurance system provides a process by which patients who need a drug can generally get it. Even though many Americans lack private health insurance, they can often receive new drugs through Medicaid programs, at public hospitals and clinics, and through free-access programs established by pharmaceutical companies. In contrast, there are few market incentives to translate housing research into improved housing or reduction of health hazards. There are no

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children institutional equivalents of drug manufacturers and insurance companies, who would profit from interventions to reduce housing health hazards. Public resources to ameliorate housing hazards are limited. Many serious housing hazards, such as lead poisoning and asthma, occur disproportionately in poor-quality housing: the adverse health effects of these housing hazards could usually be eliminated by moving those at risk to better quality housing. However, low-income families often cannot afford to move to better private housing and the availability of public housing (usually lead free) is very limited. Research on housing health hazards involving children has in some cases led to tangible benefits to affected communities and individuals. Examples are laws that require smoke alarms, window bars to protect children from falls, and prohibitions on lead in paint. However, research on other housing health hazards has not typically led to tangible benefits for those exposed to the hazards. As a result, affected communities may question the need for or the value of additional research. Housing health hazards researchers commonly report that community advisory boards and partners note that previous research has not provided any benefits to the community (Israel et al., 2003; Minkler and Wallerstein, 2003). At the first meeting of this committee, community representatives similarly testified about the lack of benefit from much research that had been carried out in their community. Indeed, a common demand from the affected community is that the research must provide some immediate benefit to families participating in the research and the community (Israel, 2003; Minkler and Wallerstein, 2003; Krieger et al., 2002b); they may not trust that they will benefit from research findings in the future. The Grimes v. Kennedy Krieger Institute ruling stated that research involving more than minimal risk needed to offer direct benefits to the children participating in the study. It is worth noting that the goal of the repair and maintenance study (see Chapter 3) was to identify less expensive methods of lead abatement. If such methods had been found to be as effective as the known expensive methods, there might have been wider adoption of the lower cost method and an increased supply of lead-safe housing. These issues have implications for the design of research protocols, as discussed in Chapter 7. Different Assessments Although laypeople may weigh the risks and benefits of any research study differently than investigators, such differences may be particularly pronounced if the research focuses on hazards occurring in low-quality housing where residents are likely to be poor and members of minority groups. Although there is limited empirical evidence supporting this point,

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children the experience of housing researchers on the committee and researchers who discussed their work with the committee supports this conclusion. Researchers may regard the physical risks of the research interventions they carry out in the home as minimal, because no invasive procedures or new drugs with physical risks will be administered. Community leaders and parents, however, may take a broader view of the risks. First, they may be concerned about baseline risks concerning the health hazard under study, as well as the risk from what is done by the researchers as part of the study. They may also be concerned about the risks of living in the homes that persist after the research interventions are carried out and the study is completed. In an intervention study, they may regard a “usual care” control group as unacceptable (Israel et al., 2003; Minkler and Wallerstein, 2003; Krieger et al., 2002b). These perceptions of risk may be associated with expectations or hopes that the risk will be eliminated, rather than just studied or partially abated. Community representatives may expect or want researchers to reduce the adverse effects of housing hazards, even though the researchers’ actions have not caused the hazards. Second, parents and community representatives may perceive risks that researchers do not appreciate, such as the risk of attempted eviction from housing if landlords disapprove of the study or the risk of recrimination from others living in the home. Similarly, community representatives may be concerned that improvements to the property will increase its value, raising rent beyond the reach of current tenants. Third, parents who enroll their children in research may not appreciate some of the risks of the study, such as invasion of privacy. Possible discrepancies in perceptions of risk ought to be identified in the early planning stages of a project, when the protocol might be modified or clarified. In other fields of research, scientists and laypeople also may have very different perceptions of risk. In environmental health, experts and nonexperts often come to different conclusions about the magnitude and significance of specific risks (National Research Council, 1989). The result is two distinctly different estimates of risk: one by experts and another by nonexperts. The risk estimates of experts ostensibly rely on what are objective criteria, such as magnitude of the hazard and the probability of its occurrence. In research on housing health hazards, the evaluation of the risks of interventions and the balance between benefits and risks is often based on expert opinion. In some circumstances, the community’s estimates of risks may incorporate other aspects of risk outside of the scientific data that experts use and may reach different conclusions. Empirical research has shown that the risks that people view as unfamiliar, beyond their control, and imposed from the outside are perceived to be a greater problem than

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children risks that are voluntarily assumed (Slovic, 2000). Ignoring these “non-quantitative” aspects of risk may lead to anger or outrage in a community about a particular risk; the risks that lead to outrage are often not the same ones that harm or kill people (Sandman, 1993). Outrage is often related to perceived fairness. The factors that lead to discrepancies in risk assessment are also at play in the assessment of the benefits and risks of housing health hazards research. The perceived unfairness of the lack of affordable decent housing may lead community members to demand that researchers improve housing health hazards, not merely study them. Researchers and residents of the community where the research would be carried out may also disagree over the likely benefits of research (Minkler and Wallerstein, 2003; Israel et al., 2003; Krieger et al., 2002b). Researchers may believe that the scientific knowledge gained from the study will ultimately benefit the children who are exposed to home health hazards. However, as discussed above, community members may doubt that the community will receive any benefits from the knowledge gained. Differences in expectation regarding risks and benefits raises ethical considerations that must be considered during the design of housing health hazards research. Researchers should discuss their protocol with community representatives to ensure that they understand the community’s views about the risks and benefits of the research and that the community and individual parents who give permission for their children’s enrollment in research understand the risks and benefits of the research. This issue is discussed in more detail in Chapters 5 and 6. CONCLUSIONS Scientific, public health, and medical research is generally viewed as an important societal good, performed to create new knowledge and ultimately to develop strategies for preventing illness and to understand, ameliorate, and even cure disease. However, all research involving human participants requires a careful balancing of the rights and welfare of the individual participants in the research with the need to make scientific and medical progress. As described in the previous chapter, the present regulatory framework in Subpart D places specific limits on the level of risk that children are permitted to experience in a research study, dependent on the potential of the research to directly benefit them as individuals. The Belmont Report, the relevant federal regulations, and Ethical Conduct of Clinical Research Involving Children (Institute of Medicine, 2004) all call for the selection of research subjects to be equitable. The broad ethical principles of respect for persons, beneficence, and justice articulated in the Belmont Report are applicable to all research with human participants, including children.

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Ethical Considerations for Research on Housing-Related Health Hazards Involving Children In subsequent chapters the committee presents specific recommendations in response to these characteristics to provide protections for children involved in research on housing health hazards. These additional protections can provide needed clarification about a research project for both the parents of these children and investigators, ensure that the rights and welfare of vulnerable subjects are protected, and allow valuable research to proceed that is intended to ultimately improve the well-being of vulnerable children. Certain characteristics that occur frequently in housing health hazards research are much less frequent in other types of research. These characteristics need to be carefully considered and their ethical implications taken into account in the design and implementation of the research.