Meeting the Unique Health Needs of Women and Children

Women’s health needs differ from those of men. Likewise, children are not simply miniature adults. A woman’s body differs critically from a man’s in both structure and function, and a child’s body doesn’t fully mimic an adult’s. Each group’s brain functions differently and responds in different ways to even the same stimuli. Each group often processes medications differently. And, of course, men, women, and children interact with the larger world and are affected by events in different ways.

Women and children have been labeled by some observers as the “unequal majority” in health and health care. Historically, the bulk of health studies have used adult men, with researchers and physicians left to infer how the studies apply to women and children. The conditions and needs of women and children, in large measure, have too frequently been set aside.

The Institute of Medicine (IOM) is working to ensure the health of the nation’s women and children by focusing on their respective circumstances, including subject areas drawn from biological, environmental, social, clinical, and legal realms, among others. Studies consider a range of diverse issues that directly affect the health of individuals and their families or affect social programs that, in turn, contribute to the well-being of large groups of people.

Improving women’s health during pregnancy

One question the IOM recently revisited is how much weight a pregnant woman should gain to protect both her health and the health of the developing fetus. Two decades ago, the IOM recommended guidelines, since



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Meeting the unique Health Needs of Women and Children Women’s health needs differ from those of men. Likewise, children are not simply miniature adults. A woman’s body differs critically from a man’s in both structure and function, and a child’s body doesn’t fully mimic an adult’s. Each group’s brain functions differently and responds in different ways to even the same stimuli. Each group often processes medications dif- ferently. And, of course, men, women, and children interact with the larger world and are affected by events in different ways. Women and children have been labeled by some observers as the “unequal majority” in health and health care. Historically, the bulk of health studies have used adult men, with researchers and physicians left to infer how the studies apply to women and children. The conditions and needs of women and children, in large measure, have too frequently been set aside. The Institute of Medicine (IOM) is working to ensure the health of the nation’s women and children by focusing on their respective circum- stances, including subject areas drawn from biological, environmental, social, clinical, and legal realms, among others. Studies consider a range of diverse issues that directly affect the health of individuals and their fami- lies or affect social programs that, in turn, contribute to the well-being of large groups of people. Improing women’s health during pregnancy One question the IOM recently revisited is how much weight a pregnant woman should gain to protect both her health and the health of the devel- oping fetus. Two decades ago, the IOM recommended guidelines, since 

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 INforMINg THe fuTure: Critical Issues in Health widely adopted, for weight gain during pregnancy. But more research has been conducted on this subject, and over the past 20 years, there have been dramatic changes nationally in the diversity and health status of women having babies. Notably, women now tend to be older when they become pregnant, and they tend to be heavier, often enter- ing pregnancy overweight or obese. Such changes may carry added health risks. The IOM, with support from a number of government agencies and private organiza- tions, has reviewed this changed landscape. The resulting report, Weight Gain During Pregnancy: Reexamining the Guidelines (2009), offers a set of recommendations—and some specific tools—that, if fully implemented, represent an important change in the care provided to women of child- bearing age. The new guidelines consider not only the welfare of the infant, as the original guidelines did, but also the health of the mother. Among its core findings, the report says that women should have a normal body mass index (a measure of body fat based on weight and New recommendations for Total and rate of Weight gain During Pregnancy, by Prepregnancy Body Mass Index (BMI) Rates of Weight Gain* Total Weight Gain 2nd and 3rd Trimester Mean (range) Mean (range) Prepregnancy BMI Range in kg Range in lbs in kg/week in lbs/week Underweight 12.5–18 28–40 0.51 1 (< 18.5 kg/m2) (0.44–0.58) (1–1.3) Normal-weight 11.5–16 25–35 0.42 1 (18.5–24.9 kg/m2) (0.35–0.50) (0.8–1) Overweight 7–11.5 15–25 0.28 0.6 (25.0–29.9 kg/m2) (0.23–0.33) (0.5–0.7) Obese 5–9 11–20 0.22 0.5 (≥ 30.0 kg/m2) (0.17–0.27) (0.4–0.6) *Calculations assume a 0.5–2 kg (1.1– 4.4 lbs) weight gain in the first trimester. SOURCE: Weight Gain During Pregnancy: Reexamining the Guidelines, p. 254.

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 Meeting the unique Health Needs of Women and Children height) when they become pregnant, and that they should gain weight dur- ing their pregnancy within a fairly narrow range, based on their age, race or ethnicity, and various other factors that may affect pregnancy outcomes. Meeting these Notably, women now tend to guidelines will require women and their be older when they become care providers to work together, starting pregnant, and they tend to before conception, with counseling efforts, be heaier, often entering often including planning for preconception pregnancy oerweight or weight loss. obese. Such changes may The report calls on federal agencies, carry added health risks. private voluntary organizations, and medi- cal and public health organizations to adopt the new guidelines and publi- cize them to their members and to women of childbearing age. reiewing federal family planning programs Family planning is known to help women—as well as men—maintain their reproductive health, and it also enables women to avoid unintended preg- nancies and plan for pregnancies. Collectively, such benefits contribute to the well-being of individuals, families, and broader society. Even so, many low-income individuals find it difficult to pay for these services, highlight- ing the critical role played by the Title X Family Planning Program, the nation’s only federal pro- gram, created in 1970, exclusively devoted to pro- viding family planning services. At the request of the Office of Family Plan- ning, the agency within the U.S. Department of Health and Human Services (HHS) that adminis- ters the Title X Family Planning Program, the IOM conducted a comprehensive review of the pro- gram. The resulting report, A Review of the HHS Family Planning Program: Mission, Management, and Measurement of Results (2009), finds that the Title X program, in large measure, has success- fully delivered critical services to those who have the most difficulty obtaining them. However, if the program is going to truly meet the needs of its targeted groups—low-income individuals and adolescents—several structural components need to be improved.

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0 INforMINg THe fuTure: Critical Issues in Health 350.0 Actual Dollars 300.0 Constant Dollars 250.0 Millions of Dollars 200.0 150.0 100.0 50.0 0.0 20 2 20 3 04 20 5 20 6 20 7 20 8 09 19 0 81 19 2 19 3 19 4 85 19 6 19 7 88 19 9 19 0 91 19 2 93 19 4 95 19 6 19 7 19 8 20 9 20 0 20 1 0 0 0 0 0 8 9 9 9 0 0 0 8 8 8 8 8 8 9 9 9 9 20 19 19 19 19 19 19 19 Estimated funding for Title X when adjusted for inflation, FY 1980–2009. SOURCE: A Review of the HHS Family Planning Program: Mission, Management, and Measurement New S-1 and 4-2 of Results, p. 111. In particular, the Office of Family Planning lacks a clear process for establishing or revising program priorities and guidelines, and developing such a process is an important priority. The strategic plan must reflect the original mission of the Title X program and an understanding of its target population; incorporate lessons gained from the field of family planning and reproductive health; provide a vision for coordination, leadership, and evaluation; address the family planning needs of individuals over the full reproductive lifespan; and be firmly grounded in high-quality evidence. reducing depression’s grip on parents and children Depression affects millions of U.S. adults over their lifetime, many of whom are parents with children. The burden of depression and the barriers to quality of care for depressed adults are increasingly well understood, but the ways in which depression affects parenting—and, in turn, children’s health and psychological functioning—are often ignored. To illuminate this problem and identify solutions, the IOM and National Research Council convened a committee to consider the identi- fication, prevention, and treatment of parental depression, along with its interaction with parenting practices, and its effects on children and fami-

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 Meeting the unique Health Needs of Women and Children lies. The resulting report, Depression in Parents, Parenting, and Children: Opportunities to Improve Identification, Treatment, and Prevention (2009), finds that parental depression is prevalent, but a comprehensive strategy to treat the depressed adults and to prevent problems in their children is absent. The report concludes that national leadership, interagency collabo- ration, federal–state cooperation, and government collaboration with the private sector are needed to support the development and evaluation of a framework that integrates health, mental health, public health, and par- enting in a life-course framework, from pregnancy through adolescence. Federal and state governments also should provide additional support for public and professional education, training, infrastructure development, and implementation efforts to improve the quality of services for affected families and vulnerable children. Likewise, more funding is needed for research, data collection, and evaluation efforts that might lead to improved prevention and treatment services for this population. Improing adolescent health serices Nearly 42 million adolescents aged 10 to 19 live in the United States, and most of them are healthy. But all too frequently, young people engage in risky behavior, develop unhealthful habits, or have chronic conditions that can jeopardize both their immediate and long-term health and safety. The three leading causes of death in adolescents—motor vehicle crashes, homi- cide, and suicide—all are tied to risky and unhealthful behaviors. As well, adolescence The system should foster is a critical period for developing positive coordination between primary habits and skills that create a strong foun- and specialty care, and it dation for healthful lifestyles and behavior should enable primary care over the full lifespan. Growing up without proiders to more easily having developed these habits can be detri- reach and follow adolescents through “safety net” settings mental to an adult’s health and well-being. The U.S. health care system has a such as hospitals and potentially key role in promoting adolescent community health centers. health. But an IOM study, conducted with the National Research Council and funded by The Atlantic Philanthropies, finds that the system is failing in that role. The study report, Adolescent Health Services: Missing Opportunities (2009), says that services often

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 INforMINg THe fuTure: Critical Issues in Health are fragmented and poorly coordinated across various settings, resulting in gaps in care in reaching all of the nation’s adolescents during this criti- cal period. Many health services also are poorly equipped to meet the disease prevention, health promotion, and behavioral needs of adolescents, and many care providers lack the necessary skills to interact appropriately and effectively with this age group. Moreover, large numbers of adolescents are uninsured or have inadequate health insur- ance, and so are unable to access care, even where available. As a blueprint for action, the report highlights critical health needs of adolescents, details promis- ing models of health services, and identifies com- ponents of care that could strengthen and improve health services for adolescents and contribute to healthy adolescent development. Among specific steps, federal and state agencies, private foundations, and insurers should work together to develop a care system that improves services for all ado- 70 Adolescent Population (Millions) 60 50 40 30 20 10 0 2000 2030 2040 2050 2020 1990 1980 2010 Year Growth in the adolescent population, aged 10 to 19, 1980–2006 and 2006–2050 (projected). SOURCE: Adolescent Health Services: Missing Opportunities, p. 32. Figure 1-1

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 Meeting the unique Health Needs of Women and Children lescents. The system should foster coordination between primary and spe- cialty care, and it should enable primary care providers to more easily reach and follow adolescents through “safety net” settings such as hospitals and community health centers. Training health professionals will be critical as well. At all levels of professional education, providers should receive comprehensive educa- tion about adolescents’ health problems and effective ways to treat their diseases and promote healthful behaviors. Furthermore, confidentiality should be protected for adolescents receiving care. They should give their own consent before receiving care and before their health information is shared with others, even their parents. Finally, the more than 5 million medically uninsured adolescents indicate a clear need for federal and state policy makers to develop strategies to ensure that all adolescents have com- prehensive, continuous health insurance coverage. Improing mental, emotional, and behaioral health among young people Among the most dangerous risks to the health and well-being of young people are depression, conduct disorder, substance abuse, and similar dis- orders. They are as commonplace today as are fractured limbs—not inevi- table, but not at all unusual—and they often carry over into adulthood. Almost one in five young people has such a disorder, or even multiple disorders, at any Among adults, half of all given time. Among adults, half of all men- mental, emotional, and tal, emotional, and behavioral disorders behaioral disorders were were first diagnosed by age 14 and three- first diagnosed by age 4 and fourths by age 24. In addition to their health three-fourths by age 4. toll, the disorders exact high economic and psychosocial costs, not only for the young people, but also for their families, schools, and communities. The price tag for treatment services and lost productivity runs an estimated $247 billion annually. The good news is that much is known about how to prevent these dis- orders before they occur. Risk factors are well established, preventive inter- ventions are available, and the first symptoms typically precede a disorder by 2 to 4 years. Yet the nation’s health system approach largely has been to wait to act until a disorder is well established and has already done consid- erable harm. All too often, opportunities are missed to use evidence-based

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4 INforMINg THe fuTure: Critical Issues in Health approaches to prevent the occurrence of mental, emotional, or behavioral disorders; establish building blocks for healthy development in all young people; and limit the environmental exposures that increase risk—approaches likely to be far more cost effective in addressing such disorders in the long run. To help in building a better health system, the National Research Council and the IOM recently reviewed the research on the prevention of men- tal disorders and substance abuse among young people. Preventing Mental, Emotional, and Behav- ioral Disorders Among Young People: Progress and Possibilities (2009) recommends a variety of strat- egies to improve the psychological and emotional well-being of this target population. The report updates a key 1994 IOM report, Reducing Risks for Mental Disorders, focusing special attention on the research and program experiences that have emerged since that time. The report describes the value of a number of prevention strategies, including: • Strengthening families by targeting problems such as substance use or aggressive behavior; teaching effective parenting skills; improving communication; and helping families deal with disruptions (such as divorce) or adversities (such as parental mental illness or poverty). • Strengthening individuals by building resilience and skills and improving cognitive processes and behaviors. • Preventing specific disorders, such as anxiety or depression, by screen- ing individuals at risk and offering cognitive training or other pre- ventive interventions. • Promoting mental health in schools by offering support to children encountering serious stresses; modifying the school environment to promote healthful social behavior; developing students’ skills at decision making, self-awareness, and conducting relationships; and targeting violence, aggressive behavior, and substance use. • Promoting mental health in communities by supporting programs designed to foster healthful social behavior; teach coping skills; and target modifiable lifestyle factors, such as sleep, diet, activity and

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 Meeting the unique Health Needs of Women and Children physical fitness, exposure to sunshine and light, and television view- ing, that can affect behavior and emotional health. How best to capitalize on such strategies? Many providers and agen- cies are responsible for the care, protection, or support of young people: the child welfare, education, and juvenile justice systems, as well as medi- cal and mental health care providers and community organizations. Yet resources within these agencies are scattered, not coordinated, and often do not effectively support prevention programs or policies. To stitch together such patchwork national leadership is necessary to make system- atic prevention efforts a high priority in the health care system as well as an integral component of local, state, and federal programs that serve young people and families. Prealence estimates of Mental, emotional, and Behaioral Disorders in Young People Diagnosis or Diagnostic Group Preva- Standard lence Error (N of studies contributing Lower Upper to estimate) (%) (%) 95% 95% One or more disorders (44) 17.0 1.3 14.4 19.6 Unipolar depression (31) 5.2 0.7 4.0 7.0 Any anxiety disorder (29) 8.0 1.0 6.2 10.3 Generalized anxiety disorder (17) 1.3 0.3 0.9 2.0 Separation anxiety disorder (17) 4.1 0.9 2.6 9.4 Social phobia (15) 4.2 1.1 2.4 7.3 Specific phobia (13) 3.7 1.3 1.7 7.7 Panic (12) 0.7 0.2 0.3 1.5 Posttraumatic stress disorder (7) 0.6 0.2 0.3 1.1 Attention deficit hyperactivity disorder (34) 4.5 0.7 3.3 6.2 Any disruptive behavior disorder (23) 6.1 0.5 5.4 7.3 Conduct disorder (28) 3.5 0.5 2.7 4.7 Oppositional defiant disorder (21) 2.8 0.4 2.1 3.7 Substance use disorder (12) 10.3 2.2 6.3 16.2 Alcohol use disorder (9) 4.3 1.4 2.1 8.9 NOTE: The prevalence estimates from each study were transformed to logit scale and their standard errors computed using the available information about the sample size and prevalences. Using weights inversely proportional to estimated variances, weighted linear regression models were fit in SAS, using PROC GENMOD with study as a fixed effect (class variable). The overall estimate (on the logit scale) and its standard error were then used to recompute the overall preva- lence and its standard error using the delta method. SOURCE: Preventing Mental, Emotional, and Behavioral Disorders Among Young People: Progress and Possibilities, p. 43.

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 INforMINg THe fuTure: Critical Issues in Health Among specific steps, the committee recommends that the White House develop an interdepartmental strategy that identifies specific pre- vention goals, directs multiple federal agency resources toward these goals, and provides guidance to state and local partners. In turn, governments at all levels should increase their investments in prevention and promotion, including setting aside resources for evidence-based prevention in men- tal health service programs and funding proven prevention approaches by school systems. Adequately funded state and local systems should craft partnerships among families, schools, courts, health care providers, and local programs to create coordinated approaches that support healthy development. Public and private organizations also should increase efforts to beef up the professional workforce by fostering development of training pro- grams and prevention standards across disciplines, including health, edu- cation, and social work. On a broader stage, a range of public and private organizations should join in promoting public education, making use of mass media and the Internet to share information about risk factors and available interventions, as well as to reduce the stigma often associated with mental, emotional, and behavioral disorders. Assessing early childhood enrichment programs In the nation’s increasing drive to improve young children’s education and development, a host of public and private organizations have developed programs to enhance the school readiness of all children, especially those from economically disadvantaged homes and communities, those with spe- cial needs, and those who learn English as a second language. These early childhood education and child care programs, such as Head Start, run by the HHS, are designed to enhance social, language, and academic skills, as well as to identify children with developmental problems so they can be given appropriate interventions. At the same time, early childhood education and intervention pro- grams are increasingly being asked to prove their worth. At the request of Congress, the National Research Council, with the assistance of the IOM and funding from HHS, considered how to identify important develop- mental outcomes of preschool children—from birth to age 5—and how best to assess them in preschools, child care settings, and other early childhood programs. The resulting report, Early Childhood Assessment: Why, What,

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 Meeting the unique Health Needs of Women and Children and How (2008), concludes that well-planned assessments can inform teaching and efforts to improve programs and can contribute to better out- comes for children. Poor assessments or misuse of the results, however, can harm both children and programs. The report emphasizes the need to view assessment as part of a broader system of early childhood interventions. It offers a set of principles to guide the design, implementation, and use of assessments in early child- hood settings. As an overarching rule, good assess- ments must be designed for specific purposes, and their aims should not be mixed. For example, the assessment of a program’s performance should not be used to judge the performance of an individual child. The purpose of any assessment should be made explicit and public in advance, and it should be conducted within a coherent system of health, educational, and family support services that pro- mote optimal development for all children. System officials should provide clearly articulated stan- dards for what children should learn and what constitutes a quality program. The report also pays attention to the limits of assessments and their possible adverse effects. On the practical side, some types of assessments may make children feel anxious, incompetent, or bored, while other types may constitute a bur- den on adults. Assessments also cost money, and they may deflect time and resources from instruction. Therefore it is important to ensure that the value of the information gathered through assessments outweighs any negative effects on adults or children and that it merits the investment of resources. Assessments done improperly also can lead to bad high-stakes decisions, all of which should be considered seriously. The report calls for future research to improve the quality and suit- ability of developmental assessment across a wide array of purposes. For example, some assessment measures have been tested only with popula- tions that do not represent the diversity of children enrolled in today’s early childhood programs. Thus, care should be used in assessing the sta- tus or progress of young children with special needs and those for whom English is a second language, as many existing assessment tools have not demonstrated their validity for these groups.

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 INforMINg THe fuTure: Critical Issues in Health CHILD’S s me SOCIAL tco COMPETENCE Ou 1 2 ENHANCE STRENGTHEN children’s families as the growth and primary nurturers development. of their children. es cess 3 4 PROVIDE LINK Pro children with educational, children and families to needed health, and nutritional services. community services. 5 ENSURE well-managed programs that involve parents in decision making. Head Start Program performance measures conceptual framework. SOURCE: Early Childhood Assessment: Why, What, and How, p. 51. Alternate Fig 3-1, from downloaded source, editable vectors Critiquing a national child health study research plan As important as it is to evaluate children’s developmental programs, it is similarly important to monitor the impact of a child’s environment on his or her health. A variety of environmental influences are said to threaten children’s health. Some are well known and widely studied. For example, a child who was exposed as a fetus to certain compounds, including lead and alcohol, often experiences a range of serious health problems. But there is considerable uncertainty about the relationship of other environ- mental factors to what often appear to be growing health problems among

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 Meeting the unique Health Needs of Women and Children children, including asthma, autism, developmental disorders, obesity, and childhood cancers. In response to both congressional and presidential initiatives, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), in cooperation with several other federal agen- cies, is undertaking the National Children’s Study (NCS). The NCS will be the largest long-term study of environmental effects on children’s health ever conducted in the United States. It proposes to examine the effects of environmental influences on the health and development of approxi- mately 100,000 children nationwide, following them from before birth until age 21. Data will be gathered on an array of measures of biological, chemical, physical, genetic, social, cultural, geographical, and other factors in a child’s environment that can affect health and development. The NCS proposes to examine many different exposures and establish—or rule out—relationships between them with many dif- ferent outcomes. In archiving the data, the NCS is intended to provide a valuable resource for analy- ses conducted many years into the future. But how should the study be done? At the request of NICHD, the National Research Council and the IOM studied the proposed research plan to assess its scientific rigor and the extent to which the NCS is being carried out with methods, measures, and collection of data and specimens to maximize scientific yields. The National Children’s Study Research Plan: A Review (2008) finds that over- all, the NCS looks promising. As proposed, the resulting database should be valuable for investigating the various hypotheses about exposures and health effects described in the plan, as well as additional hypotheses that are likely to evolve as the study proceeds. Among the plan’s strengths, it would provide enough statistical power to examine many hypothesized relations that cannot be investigated with smaller samples. The data, gathered prospectively over the entire course of pregnancy, childhood, adolescence, and early adulthood, will enable exploration of many new relations between exposures and outcomes. For example, data will be collected in women from before they conceive and during the early stages of gestation, a period when certain environmental

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0 INforMINg THe fuTure: Critical Issues in Health A New Definition of Children’s Health The report of the Committee on Evaluation of Children’s Health, Children’s Health, The Nation’s Wealth (National Research Council and Institute of Medicine, 2004), defines children’s health as follows: Children’s health is the extent to which individual children or groups of children are able or enabled to (a) develop and real- ize their potential, (b) satisfy their needs, and (c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments. This definition draws upon an explanation from the World Health Organization that health is a state of complete physical, mental, and social well-being, not merely the absence of disease or infir- mity; a collaborative effort of the European Union Health Monitor- ing Programme to develop the Child Health Indicators of Life and Development model; the positive health principles embraced by the Ottawa Charter for Health Promotion (1986); and the research literature cited in the report. Key features of the new definition of children’s health include three distinct but related domains: • health conditions, “a domain that deals with disorders or illnesses”; • functioning, “which focuses on the manifestations of indi- vidual health in daily life”; and exposures may prove to be critically important. Additionally, the array of measures to be documented will permit investigation of relationships that have not previously been studied. But the NCS also has some important weaknesses and shortcomings that may diminish the study’s value. First, the study is being implemented without sufficient pilot testing. The study design is extremely complex in

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 Meeting the unique Health Needs of Women and Children • health potential, “which captures the development of health assets that indicate positive aspects—competence, capacity, and developmental potential.” The report describes these domains in detail and also describes ways to measure not only aspects of each domain, but also the in- fluences on children’s health, which are defined to include: • Children’s biology • Children’s behavior • Physical environment o Prenatal exposures o Childhood exposures o Home, school, and work settings o Child injury and the provision of safe environments o The built environment • Social environment o Family o Community o Culture o Discrimination • Services • Policy SOURCE: The National Children’s Study Research Plan: A Review, p. 45. terms of identifying subjects, enlisting their enrollment and continued par- ticipation, administering the large number of survey and clinical instruments, and managing huge databases generated by disparate organizations. In addi- tion, there are various technical questions concerning the kinds of measure- ment instruments to be used and the timing of their application. Such con- cerns could be addressed during an expanded pilot phase to great benefit.

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 INforMINg THe fuTure: Critical Issues in Health Another potential trouble spot is the plan’s failure to prepare ade- quately for disclosure of risk to participants. As soon as data collection begins, the NCS will face questions about the circumstances under which information about a child’s health and development, as well as his or her exposure to toxic agents, should be conveyed to participants and their parents. The study calls for providing information on conditions that are “clinically relevant and actionable,” but this category needs to be better defined and made operational. Similarly, there is insufficient detail in the plan about how decisions will be made about what to disclose. Some of the decisions—for example, regarding transmitting information about fetal defects encountered through ultrasounds—urgently need to be made.