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Page 324 9 Ethical and Legal Issues in Child Maltreatment Research Child maltreatment research requires a host of ethical and legal considerations in formulating a research agenda for this field. Although research in this field typically focuses on children who have been identified through case reports of child abuse or neglect, studies on prevention and intervention strategies as well as those on the etiology or consequences of child maltreatment may uncover previously undetected incidents of prior, current, or imminent abuse. The ethical and legal obligations of research investigators to their research subjects1 can be problematic, especially when research topics involve embarrassing, violent, and illegal actions (Myers, 1992; Sieber, 1992a,b). The panel reviewed the state of knowledge about ethical issues in child maltreatment research, both to identify gaps in that knowledge base and to highlight areas in which studies are needed to examine basic assumptions and guidelines that influence research behavior and project outcomes. Such studies can help clarify the needs and values of the research community, research subjects, and other parts of society; strengthen the integrity of research on child maltreatment, especially in the development of large data sets; and offer guidance when conflicts develop among competing interests. Certain key ethical questions deserve explicit attention in the field of child maltreatment studies: • Is it acceptable to misinform or withhold information about the purpose of a study from prospective subjects in a child maltreatment research project?
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Page 325 • What is the relationship between confidentiality certificates and mandatory reporting requirements? • What are the limits and obligations of mandated reporting in the context of research activities? • Should information obtained in a study of children's behavior be disclosed to parents or guardians? The panel also selected several legal issues for review, although the scope of effort in this area was limited by the composition of the panel and the mandate of the study. As a result, the issue of children's rights in the context of adult relationships is not thoroughly explored in this study, even though this issue can be an integral aspect of research efforts. Comprehensive reviews of legal issues in the field of child maltreatment have recently been published (see, for example, Myers, 1992), but such reviews focus primarily on legal issues associated with the treatment of child abuse cases within administrative agencies and the courts rather than research studies. The questions noted above are not completely resolved in the following discussion, but the panel has identified areas in which further research may assist in their resolution. Framework Of Analysis Ethical and legal issues that require consideration in formulating a research agenda for studies of child maltreatment fall within the following three categories: (1) The use of human subjects in research. Research with human subjects involves a well-documented set of ethical and legal issues, associated with many different types of scientific studies and investigations, including experimental, field, and clinical research, surveys, observational studies, and interviews (Levine, 1986; Sieber, 1992b; Stanley and Sieber, 1992). (2) The use of children in research. The particularly vulnerable and dependent status of children places special obligations on research investigators, including greater protections for the child's privacy, confidentiality, and autonomy (Levine, 1991; Melton, 1982, 1983). The developmental status of the child requires special consideration, since differences in the maturity between a preschool child and an adolescent may alter their needs for protection (Thompson, 1992). (3) Socially sensitive research. Scientists involved in child maltreatment studies must confront ethical and legal questions similar to those that arise on other socially sensitive topics that sometimes include criminal activities, such as research on substance abuse behaviors, prostitution, sexual behaviors, and violence.
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Page 326 This discussion identifies significant ethical and legal issues from each of these categories that should be considered in developing a research agenda for child maltreatment studies. Such issues should be raised explicitly now to strengthen this area of empirical study and to inform the development of policies, regulations, and legislation that may affect subject rights and researcher obligations. The panel anticipates that ethical and legal issues will gain increasing prominence with the growth of research activities on child maltreatment, especially as researchers acquire the ability and resources to conduct long-term prospective studies of nonclinical samples involving large numbers of children and families. Appropriate consideration of such issues can strengthen the integrity of research on child maltreatment. Disregard for these issues can disrupt research investigations and can stimulate additional legislative or bureaucratic requirements that could diminish the scope or creativity of future efforts. Consequently, the panel's research agenda includes topics that can foster greater understanding and possible resolution of difficult ethical or legal issues in child maltreatment research. Issues In Research On Human Subjects Three fundamental principles have guided the ethical framework for research on human subjects: (1) respect for personsthe obligation to treat individuals as autonomous agents and the need to protect those with diminished autonomy; (2) beneficencethe principle commonly interpreted as "doing no harm" as well as maximizing possible benefits and minimizing possible harm; and (3) justicethe principle of fairness, including a fair sharing of burdens and benefits (Levine, 1986). In most cases, these principles are mutually reinforcing and potential conflicts can be resolved by appropriate research designs and informed consent procedures (Levine, 1986). But at times, value conflicts and ethical dilemmas can arise. For example, a scientist might be uncertain whether to emphasize the principle of beneficence or respect for persons in determining whether or not to disclose to a parent information revealed by a child, especially if the child is an adolescent. Research on both victims and offenders in child maltreatment studies is subject to the same federal regulations that govern all human subjects research (45 CFR 46). In addition, federal regulations require additional protections for children involved in research (Subpart D). Some studies of child maltreatment may also be governed by Section 46.407, "Research not otherwise approvable which presents an opportunity to understand, prevent, or alleviate a serious problem affecting the health or welfare of children." Technically, federal regulations apply to federally funded research, although most institutions that receive federal funds apply the same regulations to
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Page 327 nonfederally funded studies. In addition to federal regulations, several professional associations (such as the American Psychological Association) have adopted guidelines that apply to human subjects research. Federal regulations and professional guidelines generally address the following substantive norms: There should be (1) a good research design, (2) competent investigators, (3) a favorable balance of harm and benefit, (4) informed consent, and (5) equitable selection of research subjects. Federal regulations require that the scientist prepare a protocol that seeks to achieve scientifically valid results. The interest of the scientist in validity affects all phases of the research project, including the development of the research design, recruitment and selection of the project sample, assignment of research subjects to control and experimental groups, choice of research instrumentation, and evaluation of research outcomes. In addition, the research protocol discusses the need for human subjects, associated risks and benefits, and the use of appropriate safeguards for risks associated with the research. The research protocol is reviewed by an appropriately constituted institutional review board to assess the impact of the proposed research on human subjects and to ensure that the safeguards are adequate. In the research protocol, the research investigator must develop an appropriate informed consent procedure that includes an explanation of potential risks of the research project to each research subject.2 Parents or authorized guardians (who may be court-appointed) are asked to provide permission for the child's research participation. The assent of the child (who is too young to give legal consent) must also be obtained. Both the child and the parent or guardian have the right to veto participation in the study at any point during the procedure. A waiver of requirements of some aspects of informed consent can be obtained as long as certain limits are observed (Levine, 1986). For example, consent might be waived if the procedure presents no greater burden than mere inconvenience and appropriate safeguards for confidentiality are in place, such as in the use of records without identifiers. Also, a waiver of parental permission may be obtained when parents are not likely to act in the child's best interests. Research that involves deception or unusual psychological stress often includes provision for a session to debrief or desensitize research subjects following any period of experimental manipulation to ensure that they have not been harmed as a result of the research procedure. All human subjects research should be voluntary and noncoercive. This condition is particularly important when the research involves persons of dependent status, such as children, prisoners, and the mentally disabled. Special protections for dependent persons have evolved in federal regulations and professional guidelines, and these conditions are particularly relevant to child maltreatment research (Levine, 1991; Stanley and Sieber, 1992).
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Page 328 The National Institutes of Health has established the Office for Protection from Research Risks (OPRR) which provides legal and ethical guidance to research scientists, administrators, and institutional research boards. The office is authorized to suspend research with human subjects that involves violations of Department of Health and Human Services regulations for the protection of human subjects. Where necessary, it can withdraw an institution's departmental assurance of compliance with the regulations. Each research institution that receives federal funds for human subjects research is required to organize an Institutional Review Board (IRB); the IRB reviews research protocols to determine whether they comply with federal regulations governing human research. Although IRBs are not the primary arbiters of scientific matters, frequently they discuss aspects of research design and procedures, both in terms of their impact on research subjects and on the likelihood of achieving the stated objective. If risks are involved in the research project, IRB members may request modifications in research design features to improve the validity of the study or to provide safeguards for human subjects in the proposed research project. Many funders require evidence of IRB approval prior to a funding decision and some scientific journals require evidence of IRB approval prior to acceptance of research manuscripts. A properly constituted IRB may have as few as 5 members, drawn from a variety of disciplines and affiliations, including research scientists, administrative officials, health professionalssuch as physicians, nurses, and other specialists involved in selected aspects of clinical careand ethicists. Regulations require that IRBs include at least one nonscientist and a community representative, such as a ministers, social worker, or other individual who provides community services. Child maltreatment research protocols are often reviewed by IRBs that examine numerous other clinical or scientific studies unrelated to issues of child abuse and neglect. Because of the small number of research scientists associated with child maltreatment research, IRB members (or research investigators) who are not familiar with the literature or methodology of studies of child abuse and neglect may call on expert consultants to examine protocols in this area for relevant risks and safeguards. Child victimization can be controversial or sensational in nature, especially when sexual abuse is involved. The potential legal liability of the research institution should emotional harm occur to children or their families during the course of the research can lead to rigorous requirements on the research investigators to demonstrate the need for the research, the validity of the research design, appropriate selection of research subjects and methodologies, and careful treatment of research data and interpretations including safeguards for privacy and confidentiality. The wide variation in child maltreatment research projects needs to be
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Page 329 considered in reviewing the significance of ethical and legal issues. Some projects involve only limited contact with research subjects, such as reviews of report records. Survey projects may be done in an anonymous fashion or with identifying information provided for follow-up interviews and evaluations. Some projects require more extensive interactions, and possible interventions, with parents and children. Some studies may raise only one or another ethical or legal issue; some may raise all of them. Projects that involve large numbers of research subjects, whose behavior is studied in the home over extensive periods of time, are more likely to contain a wider range of difficult ethical and legal issues than those that involve small study samples requiring only minimal interactions between the investigator and subject in an institutional setting. Ethical Issues In Child Maltreatment Research Many ethical issues arise in the course of human subjects research, some of which have special relevance for studies of child maltreatment. Five issues that deserve special attention include: (1) the recruitment of research subjects; (2) informed consent and deception; (3) assignment of subjects to experimental or control programs; (4) issues of privacy, confidentiality, and autonomy; and (5) debriefing or desensitizing of research subjects following research procedures that involve deception or significant stress. Recruitment of Subjects Investigators often have difficulty identifying and recruiting large and representative groups of subjects, especially when investigating controversial or low-base-rate phenomena. Scientists are thus dependent on various institutions and personnel for the assessment and recruitment of appropriate subjects. Potential subjects for child maltreatment research may be referred by family service programs prior to or following a report of child abuse and neglect, or they may be selected from case reports by child protective service or child welfare officials. Since case workers often identify and recruit potential subjects, the nature of the relationships among the scientific investigator, the case worker, and the research subject in child maltreatment studies deserves special consideration. Researchers generally are familiar with the requirements of voluntarism in human subjects research, but they are often not present when potential subjects are recruited for their project. Many child welfare agencies have a less than ideal clinical relationship with the parents of abused or neglected children (Bradley and Lindsay, 1987). The status of these research subjects, many of whom may be under investigation or involved in legal pro-
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Page 330 ceedings, is comparable to that of other ''captive populations" in human subjects research. Potential subjects may be told, or may incorrectly believe, that participation in the research will be beneficial to their family or may mitigate severe penalties (such as the removal of their children). As a result, elements of real or perceived coercion may exist in a subject's initial agreement to volunteer for the research. A second issue to consider in subject recruitment is the offering of monetary payments or desired goods in return for research participation. A modest financial stipend is generally appropriate to cover the inconvenience and transportation costs incurred by a participant in a research study (Bradley and Lindsay, 1987). However, large sums may be coercive, especially for low-income participants (Keith-Spiegel and Koocher, 1985; Koocher and Keith-Spiegel, 1990). The American Psychological Association guidelines for research indicate that subjects must be informed of their right to terminate their participation without forfeiting their honoraria (American Psychological Association, 1987; Bradley and Lindsay, 1987). Instead of monetary stipends, some investigators offer such items as videotapes of the subjects' children, small household appliances, and toys for the children as incentives for participation, a practice that has not been discussed in professional research guidelines. Informed Consent and Deception One of the most difficult ethical issues to resolve in child maltreatment studies is the extent to which the true purpose of the research project is disclosed to and discussed with the subject or parent. As noted by Bradley and Lindsay (1987), in all areas of human research scientists must walk a fine line between protection of their subjects and procedures designed to enhance the validity and merit of scientific results. The social stigma and legal consequences of child abuse and neglect, as well as the possible ramifications for individuals and their families, require a careful review of fundamental principles that should guide responsible research practice in this area. Researchers typically believe that full disclosure of the purpose of a child maltreatment study would limit participation to admitted abusers, a procedure that would severely curtail the strength and scope of their research. Subjects therefore might be told that they are participating in a study of "families or children with problems" or "ways that families punish children who misbehave." One study of research procedures in child maltreatment studies has recommended that researchers be encouraged in their publications to include details about what was told to the subjects regarding the purpose of the study (Bradley and Lindsay, 1987). Accurate but incomplete descriptions of the purpose of the research
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Page 331 study are common, and good clinical judgment is often the primary source of guidance in developing such descriptions. In some cases, prospective subjects may be told that some information is being withheld deliberately (Levine, 1986). The withheld information may involve the purpose of the entire study or the nature of some methods used in the study. Many scientists believe that subjects should never be deliberately deceived about the nature of the study, but the deliberate withholding of information may be necessary to maintain the validity of the study. In cases in which information is deliberately withheld, professional guidelines have urged that disclosure should be given (dehoaxing) at the conclusion of the subject's participation and the subject should be returned to a good state of mind about the experience (desensitizing) (American Psychological Association, 1987; Holmes, 1976a,b; Sieber, 1992b). However, dehoaxing is sometimes harmful, and desensitizing is sometimes impossible. Deception research has profound implications, since it may carry over into relationships of the subjects with their own family members as well as with clinicians, social workers, law enforcement personnel, and so forth. For example, parents who are presented with photos in which their child appears to be misbehaving (such as destroying a toy or scribbling on a wall) may conclude that their child is "bad" or may feel that prior negative perceptions of their child have been confirmed (Bradley and Lindsay, 1987). Such research practices may be uncommon, but they can affect other areas of deceptive research if inadequate safeguards are in place. The methods of obtaining consent and parental permission are also important to consider. The process of obtaining consent involves more than the completion of a written formit requires a discussion, in lay terms, of the purpose of the study and potential risks that may accompany the research. The consent form itself is the legal record documenting that such a discussion has occurred. Studies of college students often rely on written consent forms, but such instruments may be poorly suited to studies of populations that are younger, undereducated, underserved, or have learning disabilities. When subjects have literacy problems, or when English is not their primary language, face-to-face methods with orally presented information about the research can facilitate the consent process. Similar problems can arise in the course of asking questions in the research process, particularly if written self-report measures are employed. In some cases, the researcher presents the entire procedure in the subjects' native language(s), sometimes assisted by translators. Studies that focus on particular ethnic groups must adapt their instruments to the traditional practices of that group. Appropriate comparative groups should be employed to distinguish maltreatment from cultural practice as well as to identify cultural practices that may contribute to maltreatment. Some research investigators have developed strategies that use proxies
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Page 332 or analogous behaviors to study physical abuse (Bauer and Twentyman, 1985; Frodi and Lamb, 1980; Pruitt and Erickson, 1985; Wolfe et al., 1983). Although such approaches may successfully resolve many ethical problems in experimental design, they present particular responsibilities for the investigator to fully debrief the research subjects. The issue of mandatory reporting is important to consider in the process of identifying informed consent (see the section on mandatory reporting requirements in Chapter 3). When issues of privacy and confidentiality are discussed in the informed consent procedure, a statement such as the following might be included and explained carefully:3 What is discussed during our session will be kept confidential with two exceptions: I am compelled by law to inform an appropriate other person if I hear and believe that you are in danger of hurting yourself or someone else, or if there is reasonable suspicion that a child, elder, or dependent adult has been abused. Assignment of Research Subjects An important ethical issue that arises in many human subject studies is the ethical acceptability of randomly assigning research participants to experimental and control treatment groups. Although random assignment is essential to scientific validity, it may be ethically impermissible if it means that a potentially life-saving or therapeutic intervention is withheld from the research subject. This issue is particularly complex when a given intervention is thought to be sufficiently effective that withholding it may constitute inhumane treatment (Kaufman and Zigler, 1992:279). Indeed, it may be unethical to select any group of abused children for a control sample in which children would not have access to possibly therapeutic services. But modifications of experimental designs can resolve dilemmas between beneficence and requirements for scientific validity (Kaufman and Zigler, 1992:279). Such modifications include treatment partitioning, in which control subjects are randomly assigned to alternative treatment programs; "waiting list" controls, which make use of the often significant time lag in gaining access to a treatment program or after its discontinuance; or selecting control subjects from nearby or comparable communities that do not have access to service programs (Cook and Campbell, 1979; Seitz, 1987). The National Institutes of Health has issued policy statements for inclusion of minorities and women in research, which should be considered in the development of child maltreatment studies (National Institutes of Health, 1991). Ethnic and social class representation should also be considered in the assignment of research subjects to experimental and control groups. Race has often been used as a grouping variable but it has less value than charac-
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Page 333 teristics linked more directly to ethnicity and culture. These latter variables often are stronger influences on attitudes and practices that are transmitted intergenerationally. The terms black or Hispanic are more political concepts than terms that accurately reflect the heritage or nationality of groups that vary by culture, national origin, and other factors (Wyatt, 1991). Sociocultural studies of child maltreatment often need to consider the immigration status of research subjects, their generational status, the extent of their acculturation, and household density. A more flexible typology is needed to identify or "unpack" critical group variables that influence behaviors and relationships. Important differences within and between ethnic groups that reflect their sociocultural experience cannot be ignored in their assignments to control or comparison groups in scientific studies. Privacy, Confidentiality, and Autonomy Throughout the research project, issues of privacy, confidentiality, and autonomy may arise. Guidelines should be prepared prior to interviews or observational studies regarding the conditions under which a researcher will divulge to parents or guardians details about the child's behavior. Parents may wish to know details about the sexual behavior of their child. Parents may also have attitudes about certain child behaviors (such as thumb-sucking, bedwetting, and masturbation) that differ significantly from those of the research investigator. Parental perceptions of risks and benefits may also differ from those of the researcher. Researchers may be reluctant to disclose information revealed by the child in any case, but particularly when the parent appears to be hostile, punitive, or acting not in the best interests of the child. The AIDS epidemic has given new force to many of these dilemmas. The growing number of cases of HIV transmission as a result of child sexual abuse, for example, raises special issues of reporting, criminal proceedings, and the possibility of discrimination based on HIV status. Another issue that affects privacy and confidentiality is data sharing, particularly when large sets of social behavior data collected for one study (such as alcoholism) are subsequently used by other researchers for studies on child maltreatment. The issues of data sharing in the use of public records are sufficiently complex that they are the focus of a separate National Research Council study (Duncan et al., 1993). Debriefing As in the area of recruitment of research subjects, research reports of child maltreatment studies rarely describe procedures used at the end of the project; either debriefings do not occur, or they are not considered impor-
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Page 334 tant enough to warrant discussion in journal articles (Bradley and Lindsay, 1987). Holmes (1976a,b) has provided a useful, though dated, outline of the depth of debriefing required in deceptive research, an approach that has substantial application in the field of maltreatment studies even if deception is not present. Debriefing subjects in a post-project interview may strengthen the research study by identifying misclassified subjects (Adair et al., 1985), increase the sophistication of the research participants, and revise misunderstandings by the subjects regarding the nature of the experiment or negative characteristics of their own or their child's performance (Bradley and Lindsay, 1987). Post-project discussions and follow-up meetings also provide opportunities for the researcher to convey useful information and insight to parents and children about practices, such as discipline, that might improve their lives. Research On Children And Families The Importance of Validity The validity of scientific research takes on special relevance in studies of children and other vulnerable populations, when research results are likely to influence social policy and public perceptions of the problem under study (Sieber, 1992a). Information that scientists disseminate about child victimization is often socially and politically sensitive and can affect both parental and professional behavior as well as public policy. Scientific information, communicated through the popular media, can influence the manner in which abusive parents view abuse, and the ways in which victims view themselves. High-quality research is needed to provide information that has a factual, scientific basis, rather than information based on conjecture or opinion. Because validity is important but hard to achieve in research on children and families, factors that affect validity are receiving increased attention. These factors include the definitions of child maltreatment, instrumentation and research methods, selection of subject samples, collection of data, interpretation of findings, and safeguards for ensuring privacy, confidentiality, and reliability in the research study. Child maltreatment research often involves retrospective study of reported cases, an approach that provides a convenient, but often limited, assessment of basic psychological and ecological factors that influence the development of child victimization. In contrast, multivariate longitudinal studies of large populations that include abused as well as nonabused children are presumed to provide more valid and generalizable conclusions, as long as appropriate methods are employed (Weis, 1989; Widom, 1988). Such studies require greater resources, time, and effort not only from investigators and participants but also from institutions and service personnel
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Page 335 who are expected to identify, treat, and prevent child abuse and neglect. Large prospective studies also expose greater numbers of children, families, and researchers to risks and uncertainties associated with observations of sensitive family behavior over extensive periods of time. A related issue of validity is associated with the reliability of child reports and testimony. As noted in previous chapters, the accuracy and veracity of child reports and the validity of psychological measures purporting to reveal incidents of abuse or neglect remain unresolved issues. The issue of the reliability of adult memories of childhood abuse, in particular, remains controversial. One major methodological problem associated with studies of child abuse and neglect is how to get a sample of young children to talk candidly about abuse and attempted abuse, especially abuse involving sexual behavior (Finkelhor and Strapko, 1992:161). Depending on the children's social context, their level of maturity and quality of interactions with peers and other families, and so forth, many children may not be able to identify certain forms of abusive behavior or to perceive it as such. Adult survivors may not recall incidents of abuse that occurred during their childhood, even if the investigator has obtained records that document such experiences. Children, or their parents, may be unwilling to discuss incidents that are personally embarrassing, violent, or stressful, especially if they believe that they were responsible for these incidents or that discussion of the incidents will cause harm to family members, not change their interactions with the offender, and not prevent future such incidents. Exaggeration, manipulation, and distortion of the circumstances of the abuse experience, expecially in retrospective studies, are also possibilities. Interviews in which researchers or therapists have been viewed as manipulating children into disclosing incidents of abuse that did not actually occur has generated much discussion about the roles and responsibilities of professionals in this field. Such concern has resulted in symposia and articles about the boundaries of appropriate professional behavior in conducting interviews with children about incidents of abuse and neglect, especially in cases in which no report of abuse has been filed. Many investigators seem to be able to conduct intensive interviews with children about these matters successfully, but several ethical issues require consideration in this research. As identified by Finkelhor and Strapko (1992), these issues include: (1) whether and how to get parental permission to conduct such interviews; (2) how to handle state reporting requirements, especially when research interviews reveal abusive or neglectful practices that do not appear to harm the children and that the children do not wish to disclose; and (3) how to reduce the trauma of the interview itself. Such issues are particularly important to address and resolve in developing prevention efforts so that unintended consequences may be avoided.
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Page 336 Research evaluations, especially in the area of child sexual abuse, have suggested that some prevention programs (such as the "good touch, bad touch" educational programs) may not diminish child maltreatment, often stimulate greater disclosure of abuse reports among the child participants, and may have unintended long-term consequences on adult sexual behavior (such as distrust of physical or sexual intimacy) that have not been carefully considered in the development of the program (Conte, 1987). In addition to these ethical issues, legal considerations may affect the validity of child maltreatment research. For example, who is authorized to give permission for a child to participate in a study of child abuse and neglect if the parent is the alleged perpetrator or cooperated with the abusing parent? Do individual parties have a right of access to information disclosed in the course of a research study if the information is pertinent to a case that is in litigation or that may be appealed? Dissemination of Research Results Research on child maltreatment receives much public attention because it affects children and adults directly and shapes norms and perceptions that can influence policy directives much more rapidly than research in fields of study more distant from everyday human activity (Sieber, 1992a). Research on human behavior often involves unique subject populations that cannot be replicated. As such it is far more politically and socially sensitive than research in the physical sciences, in which controversial or uncertain research findings can often be tested by replication. Thus, breakthroughs in the physical sciences are far easier to verify, but also far more difficult to discuss or interpret without specialized training. They are more likely to be discussed in the media only when significant scientific generalizations (or exorbitant research costs) have been achieved that are understandable to the public. Public misinterpretation or misunderstanding of physical sciences research findings, even if it occurs, rarely has immediate social consequences. Problems can arise when misinformation about child abuse and neglect is disseminated to the general public. Such problems are particularly significant when members of the research community are the initial sources of reports of invalid research results on child maltreatment. Unconfirmed or inaccurate research findings may also be publicized by the press against the advice or wishes of the researchers. Such incidents can result in vigorous, often sensational, discussions in media and social policy circles. Research On Socially Sensitive Topics Scientific studies of child maltreatment require extraordinary care and confidentiality in eliciting, safeguarding, and disclosing information from
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Page 337 respondents because of the socially sensitive nature of the research subject. Family disciplinary practices, the use of violence between family members, and expressions of anger or rage are difficult to detect, observe, and record. Research on children's sexual development is one of the most unexamined areas in all of social science and is impeded by a variety of social taboos (Finkelhor and Strapko, 1992; Furstenberg et al., 1989; Wyatt et al., in press). Political sensitivities have impeded governmental support for studies of sexual behavior in general and discussions of sexual behavior with children in particular. Ethical ambiguities surround this topic. Unlike priests, physicians, and lawyers, social scientists are not traditionally entitled to testimonial privilege. Scientists do not have an unrestricted right to determine whether to reveal to a law enforcement officer or a court official the identity of their research subjects or the nature or sources of their information. Field researchers who conduct studies of criminal behavior or socially sensitive behavior may be subject to legal interventions when data are thought to be relevant to cases that are in litigation or are under judicial or legislative review (Myers, 1992). Conflicts between the interests of law enforcement officials and the goals of the research community have resulted in the development of specific legislative exemptionscalled certificates of confidentialitythat protect some scientists from subpoenas of their research data. The certificate of confidentiality is the most effective, yet underutilized, protection against subpoena. Researchers involved in socially sensitive studies also have sometimes relied on anonymous data collection, the use of aliases, transmission of data to colleagues in foreign countries, and statistical strategies as ways of guarding the confidentiality of their data (Sieber, 1992b). The U.S. Department of Health and Human Services may authorize certificates of confidentiality for research investigators conducting socially sensitive research to protect the identities of their research subjects (Levine, 1986; 42 CFR Part 2a). The certificates provide immunity from subpoena, and are most commonly requested in the conduct of research sponsored by the National Institute of Mental Health, the National Institute of Alcoholism and Alcoholic Abuse, and the National Institute of Drug Abuse, although the research need not be funded by or connected with any federal agency (Sieber, 1992b). Certificates of confidentiality are available on application to the NIH Office for Protection from Research Risk for any funded or unfunded research if there is concern that confidentiality is necessary to achieve the research objectives. Certificates of confidentiality are also available for research funded by the Department of Justice. Legal protections have established that information developed through research supported by the National Institute of Justice, for example, "shall be immune from the legal process" (42 U.S.C. 3789).
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Page 338 Although the federal certificate of confidentiality may preempt state reporting requirements, legal opinions on this matter differ (Sieber, 1992a). Few researchers have obtained certificates of confidentiality (Melton, 1990), and none have tested the relevance of such waivers to the mandatory reporting requirements of state child welfare laws. Hence, the prevailing practice is for researchers to assume that certificates of confidentiality or waivers do not preempt state reporting laws, and the informed consent procedure serves as the mechanism by which scientists warn research subjects of their reporting obligations. There appears to be no penalty for the researcher who testifies after obtaining a certificate of confidentiality, but criminal penalties do exist for those who deliberately withhold evidence of suspected child maltreatment. Conclusions Researchers who seek to foster valid and creative research projects must address fundamental ethical issues in the recruitment of research subjects; the process of obtaining informed consent; the assignment of subjects; debriefing, dehoaxing, and desensitizing subjects when deception or stressful research is involved; and in providing referrals for children and family members in distress. The ethical and legal issues in child maltreatment research discussed here have been derived from legal and ethical literature regarding the use of human subjects in research, the use of children as research subjects, and the conduct of research on socially sensitive topics. If larger prospective, longitudinal studies of child maltreatment are developed, as recommended in this report, the ethical and legal issues discussed in this chapter will acquire greater importance and emphasis. The need to ensure the validity of large cohort studies and to develop rigorous evaluations of interventions that might serve as models for other communities will require increased emphasis on issues of scientific validity, data sharing, conflicts between principles of confidentiality and disclosure, and the need for legal protections. Finally, the nature of professional and legal rights and obligations in areas such as mandated reporting, confidentiality for research subjects, and informed consent require more detailed review and analysis. Research Recommendations The panel believes that a research agenda for child maltreatment studies should include attention to fundamental ethical and legal issues that pervade this field of inquiry. In particular, the panel recommends the following topics as research priorities:
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Page 339 Recommendation 9-1: The disclosure of unreported incidents of abuse by research subjects requires greater analysis to clarify the circumstances that foster such disclosures, the methods by which researchers respond to subject disclosures, and the outcomes for research subjects who disclose incidents of maltreatment. Public awareness of the traumatic consequences of child abuse and neglect may begin to affect research participation. Children and adult survivors who disclose unreported incidents of maltreatment to researchers will require professional guidance and support in dealing with the consequences of their maltreatment. Furthermore, the ethical and legal role of researchers in responding to such disclosures requires methodological considerations in formulating appropriate guidance for the research community. Recommendation 9-2: Methodological research is needed to develop design procedures and resources that can resolve ethical problems associated with recruitment, informed consent, privacy and confidentiality, and assignment of experimental and control groups. In particular, the use of masked data strategies may acquire additional importance in the development of large data sets that will be used in secondary analyses by researchers who were not associated with the primary collection of the data. These issues would benefit from clarification of the nature of conflicting interests in the course of research, development of clinical advice and experience that can resolve such conflicts, and identification of methods by which such guidance could be communicated to researchers, institutional research boards, research administrators, research subjects, and others. Ethical issues likely to arise in longitudinal prospective studies need to be identified, to clarify principles of responsible conduct regarding the treatment of risk factors, suspected abuse scenarios, and the rights of research subjects to privacy and confidentiality. Issues related to the sharing of research data, particularly in studies that were not designed as child maltreatment research projects, will need to be addressed in research that focuses on antecedents and consequences of various forms of abuse and neglect. The selection of appropriate models for long-term studies also requires consideration. Recommendation 9-3: Research is needed to determine the impact of debriefings both on subjects' post-project perceptions as well as on research results. This research will have ethical implications for the inclusion or omission of such interviews in research designs.
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Page 340 Recommendation 9-4: Research on the institutional research board process should be done to improve the quality of the process by which studies of child abuse and neglect are initiated and approved. The research community could benefit from studies that determine factors that influence approval and disapproval decisions by institutional research boards, the use of waivers and certificates of confidentiality, and other aspects of ethical decision making connected with research on child maltreatment. Notes 1. The term research subject has sometimes been replaced by the term research participant to convey more respect for those who participate in research studies. As noted by Sieber (1992b:13), however, the term subject ''continually reminds the reader that the person being studied typically has less power than the researcher and must be accorded the protections that render this inequality morally acceptable." In the case of research on children, it is highly likely that they will more often be "subjects" than "participants." 2. Informed consent involves several basic components, including a description of the purpose of the research project, an explanation of the procedures in which the subject will participate, and a discussion of potential risks of the project. Following this presentation, the research subject is asked to sign a written form indicating that he or she understands the purpose of the study and agrees to participate. When children are involved as research subjects in the study, the parent or guardian is requested to sign an "assent" form as a proxy for the child. The documentation for informed consent may be waived in some instances. 3. Adapted from a statement developed by David H. Ruja, discussed in E. Gil, The California Child Abuse Reporting Law: Issues and Answers for Professionals. Publication 132(10/86). Sacramento, CA: California Department of Social Services, Office of Child Abuse Prevention. References Adair, J.G., T.W. Dushenko, and R.C. Lindsay 1985 Ethical regulations and their impact on research practice. American Psychologist 40:59-72. American Psychological Association 1987 Casebook on Ethical Principles of Psychologists. Washington, DC: American Psychological Association. Bauer, W.D., and C.T. Twentyman 1985 Abusing, neglectful and comparison mother's responses to child-related and non-child-related stressors. Journal of Consulting Clinical Psychology 53:335-343. Bradley, E.J., and R.C. Lindsay 1987 Methodological and ethical issues in child abuse research. Journal of Family Violence 2(3):239-255. Conte, J. 1987 Ethical issues in evaluation of prevention programs. Child Abuse and Neglect. 11(2):171-172. Cook, T., and D. Campbell 1979 Quasi-Experimental Design and Analysis Issues for Field Settings. Chicago: Rand McNally.
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Page 341 Duncan, G.T., T.B. Jabine, and V.A. deWolf, eds. 1993 Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics. Washington, DC: National Academy Press. Finkelhor, D., and N. Strapko 1992 Sexual abuse and prevention education: A review of evaluation studies. Chapter 7 in D.J. Willis, E.W. Holden, and M. Rosenberg, eds., Prevention of Child Maltreatment. New York: John Wiley and Sons. Frodi, A.M., and M.E. Lamb 1980 Child abusers' responses to infant smiles and cries. Child Development 51:238-241. Furstenberg, F.F., J. Brooks-Gunn, and L. Chase-Landsdale 1989 Adolescent fertility and public policy. American Psychologist 44(2):313-320. Gil, E. 1982 The California child abuse reporting law: Issues and answers for professionals. Publication 132 (10/86). This booklet is printed and distributed by the State of California Department for Social Services, Office of Child Abuse Prevention, 744 P Street, M.S. 9-100, Sacramento, CA, 95815. Holmes, D.S. 1976a Debriefing after psychological experiment: I. Effectiveness of postdeception dehoaxing. American Psychologist 31:858-867. 1976b Debriefing after psychological experiment: II. Effectiveness of experimental desensitizing. American Psychologist 31:868-875. Kaufman, J., and E. Zigler 1992 The prevention of child maltreatment: Programming, research, and policy. Chapter 12 in D.J. Willis, E.W. Holden, and M. Rosenberg, eds., Prevention of Child Maltreatment. New York: John Wiley and Sons. Keith-Spiegel, P., and G.P. Koocher 1985 Ethics in Psychology Professional Standards and Cases. New York: Random House. Koocher, G.P., and P. Keith-Spiegel 1990 Children, Ethics, and the Law: Professional Issues and Cases. Lincoln: University of Nebraska Press. Levine, R.J. 1986 Ethics and Regulation of Clinical Research. Second edition. New Haven: Yale University Press. 1991 Respect for children as research subjects. Chapter 117 in M. Lewis, ed., Child and Adolescent Psychiatry; A Comprehensive Textbook. Baltimore: Williams and Wilkins. Melton, G. 1982 Children's rights: Where are the children? American Journal of Orthopsychiatry 52(3):530-538. 1983 Child Advocacy: Psychological Issues and Interventions. New York: Plenum Press. 1990 Certificates of confidentiality under the Public Health Service Act: Strong protection but not enough. Violence and Victims 12:369-386. Myers, J.E.B. 1992 Legal Issues in Child Abuse and Neglect. Newbury Park, CA: Sage Publications. National Institutes of Health 1991 NIH Guide to Grants and Contracts. 20(32):1-3. August 23. Pruitt, D.L., and M.T. Erickson 1985 The Child Abuse Potential Inventory: A study of concurrent validity. Journal of Clinical Psychology 41:104-111.
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Page 342 Seitz, V. 1987 Outcome evaluation of family support programs: Research design alternatives to true experiments. In S.L. Kagan, D. Powell, B. Weissbound, and E. Zigler, eds., America's Family Support Programs: Perspectives and Prospects. New Haven: Yale University Press. Sieber, J. 1992a Issues Presented by Mandatory Reporting Requirements. Background paper prepared for the National Research Council's Panel on Research on Child Abuse and Neglect. 1992b Planning Ethically Responsible Research. Newbury Park, CA: Sage Publications. Stanley, B., and J.E. Sieber, eds. 1992 Social Research on Children and Adolescents: Ethical Issues. Newbury Park, CA: Sage Publications. Thompson, R.A. 1992 Developmental changes in research risk and benefit: A changing calculus of concerns. Chapter in B. Stanley and J.E. Sieber, eds., Social Research on Children and Adolescents: Ethical Issues. Newbury Park, CA: Sage Publications. Weis, J.G. 1989 Family violence research methodology and design. In L. Ohlin and M. Tonry, eds., Family Violence. Chicago: University of Chicago Press. Widom, C. 1988 Sampling biases and implications for child abuse research. American Orthopsychiatric Association 58(2):260-270. Wolfe, D.A., J.A. Fairbank, J.A. Kelly, and A.S. Bradlyn 1983 Child abusive parents' physiological responses to stressful and non-stressful behavior in children. Behavior Assessment 5:363-371. Wyatt, G.E. 1991 Examining ethnicity versus race in AIDS related research. Social Science and Medicine 33(1):37-45. Wyatt, G.E., M. Newcombe, M. Riederlee, and C. Notgrass in press The Effects of Child Sexual Abuse on Women's Sexual and Psychological Functioning. Newbury Park, CA: Sage Publications.
Representative terms from entire chapter: