bluuebunny/crossref_metadata_2025 huggingface dataset:
Prevention for individuals and the ‘high-risk’ strategy
Authors: Rose Geoffrey
Published: September 2009

This chapter begins with a discussion of prevention and clinical care and the high-risk preventive strategy. It then presents policy guidelines for screening to assess risk. The strengths and weaknesses of the high-risk preventive strategy are considered.
The population strategy of prevention
Authors: Rose Geoffrey
Published: September 2009

This chapter argues that the population strategy of prevention starts with the recognition that the occurrence of common diseases and exposures reflects the behaviour and circumstances of society as a whole. This recognition rests on sociological, moral, and medical grounds. The strengths, limitations, and problems of the population strategy are discussed.
Commentary
Authors: Khaw Kay-Tee , Marmot Michael
Published: September 2009

This introductory chapter begins with a discussion of Geoffrey Rose's concepts and applications. It then discusses the continuity of risk and population impact, genes and the genomic revolution, policy and research, and population action. It argues that the essential determinants of the health of society are to be found in its mass characteristics: the deviant minority can only be understood when seen in its societal context and effective prevention requires changes which involve the population as a whole.
Clinical Trials
Authors: Meinert Curtis L.
Published: September 2009

This book starts with a general discussion of clinical trials. It goes on to describe the activities of a typical study, comparing single center and multicenter trials, reviewing cost factors and assessing the usefulness of clinical trials for the practice of medicine. The book then considers design principles and practices such as sample size estimates and the mechanics of treatment masking, and provides a detailed consideration of a variety of issues involved in implementation and analysis, including execution, follow-up, and quality assurance. The book also includes a three-chapter section on management and an in-depth treatment of reporting procedures.
Searching for the Causes of Mental Disorders
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter introduces an integrative approach to studying causes in the present era, using the example of anorexia nervosa, a disorder that occurs mainly in young women and carries some risk of mortality. It argues that psychiatric epidemiology is well positioned for a concentrated search for the causes of mental disorders. It proposes that risk factor methods be fully exploited in this endeavor. It also advocates the adoption of a broad conceptual framework, an integrative approach suitable for studying biological, genetic, psychological, and societal causes of mental (and other) disorders.
Detecting Causes
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter provides the foundation for understanding how studies are designed for the purpose of detecting causes. It presents a framework derived from two sources: psychology and epidemiology. The starting point is a schema widely adopted in psychological research and influential in many other fields, including social sciences and epidemiology. Drawing upon the work of epidemiologists such as Susser (1973) and Rothman and Greenland (1998), this schema is tailored for use in epidemiology.
Measures of Association
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

The investigation of an exposure-disease relationship usually begins by looking for an association between the exposure and the disease. This association is evaluated by generating some simple quantitative measure that describes the strength of their association as fairly and accurately as possible. This chapter introduces the measures of association used for this purpose and some of the impediments to obtaining good measures.
Prototypical Cohort Study
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

Cohort studies compare individuals exposed and unexposed to a hypothesized risk factor, and the respective proportions who develop the disease over a specified period of time. This chapter introduces the main elements of the cohort design. To facilitate exposition, it describes as a prototype a prospective population cohort study.
Gauging the Precision of Measures of Association
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

Point estimates and confidence intervals are used to make judgments about the strength of an association between an outcome and an exposure of interest. To interpret findings, we have to take account of the influence of chance (sampling variability) on the results observed in the study sample. This chapter presents methods that help quantify the degree of uncertainty in the evaluation of a potential association.
Using Significance Tests in Establishing Associations
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

Statistical significance testing can be viewed as a formal method for assessing the evidence with regard to a scientific conjecture. It reflects the degree to which we can be confident that an association observed in the study sample is also present in the target population. Significance tests play a central role in psychiatric epidemiology, and in fact across the full gamut of human research. Given the omnipresence of statistical significance tests, it is essential for all investigators to understand the principles behind these tests and guidelines for their interpretation. This chapter provides this background and makes recommendations for sensible evaluation of test results.
Planning Studies: Estimating Power and Sample Size
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

Human research studies can be very difficult to conduct, very time-consuming to complete, and extremely costly. They require tremendous commitment from the investigators involved, as well as from all of the participants who contribute their time, their effort, and even their blood and other physical samples to further the cause of research. Given these considerations, investigators need to quantify, before embarking on a study, their ability to detect meaningful associations under the proposed study design. This chapter describes some of the most basic and commonly used formulas for computing power and sample size.
Adjustment for Covariates
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter introduces methods of statistical adjustment. Statistical adjustment is used to reduce the effects of confounders; or, more precisely, to infer what association would have been observed had there been no confounding. The main analytic methods for control of confounding include stratification, statistical modeling, and subgroup analysis. The chapter begins by focusing on stratification and regression analysis as methods of analysis for unmatched samples. It then describes methods for analyzing matched data. Although matching to control for confounding is done before the data are collected, it is critically important to apply statistical methods that account for the matching, because the analysis must correspond to the design to attain valid results. Subgroup analysis is briefly considered at the end of the chapter.
Event Time Analysis
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter describes statistical methods for taking account of unequal attrition, that is, different follow-up times across exposed and unexposed groups in a cohort study. It considers methods for analyzing time to an event as an outcome in its own right. The chapter defines the outcome as the time until disease onset. From this perspective, a nondiseased subject in the study is not a control as in a case-control study, but someone who has not yet developed the disease. To analyze disease incidence data from this perspective, methods that come under the interchangeable headings of survival analysis, time-to-event analysis, or failure-time analysis are used.
Genetic Linkage Studies
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter describes the basic concepts and methods of genetic linkage studies. It first describes what linkage means and how investigators go about detecting linkage. It then discusses the causal paradigm of the genetic linkage study and contrasts linkage with association studies. Finally, using the example of dystonia, it shows how linkage can be interwoven with other designs in the search for genetic causes.
Eco-Epidemiology
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter begins with a discussion of three recent developments in epidemiology. It then argues that an integrated approach to investigating disease and its prevention will necessarily encompass these elements: life course trajectories, levels of causation, and the interconnections among different causes and disease domains. To describe this emergent way of thinking, it proposes the term eco-epidemiology.
Causal Explanation Outside the Black Box
Authors: Susser Ezra , Schwartz Sharon , Morabia Alfredo , Bromet Evelyn J.
Published: September 2009

This chapter discusses approaches that could be used to answer questions that often fall outside the range of risk factor studies. Some of these approaches are accommodated by extension of the scope of risk factor designs. Others are still embryonic, and their full development is a central challenge for epidemiology and, specifically, psychiatric epidemiology in the current era. It focuses on the three domains corresponding to the questions asked in this chapter: differences in disease rates across populations, the context of the life course, and the rise and fall of disease rates over time.
Deliver Us from Evil
Authors: Ford, Lacy K.
Published: September 2009

A major contribution to our understanding of slavery in the early republic, this book illuminates the white South's twisted and tortured efforts to justify slavery, focusing on the period from the drafting of the federal constitution in 1787 through the age of Jackson. Drawing on primary sources, including newspapers, government documents, legislative records, pamphlets, and speeches, this book recaptures the varied and sometimes contradictory ideas and attitudes held by groups of white southerners as they debated the slavery question. The book conveys the political, intellectual, economic, and social thought of leading white southerners, vividly recreating the mental world of the varied actors. The book also shows that there was not one antebellum South but many, and not one southern white mindset but several, with the debates over slavery in the upper South quite different in substance from those in the deep South.
Chapter One Owning Slaves, Disowning Slavery
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter examines the changing structure and demography of slavery in the early republican upper South. It explores how the decline of the Chesapeake tobacco economy gave masters an incentive to dispose of surplus slaves, just as the rhetoric of the American Revolution gave upper South masters an ideological motivation to put slavery on a slow journey toward extinction. It also looks at how the expansion of slavery across the Appalachians into Kentucky and Tennessee engendered ambivalence toward the institution among whites in the new states.
Chapter Three Opening the Slave Trade
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter details how the first short-staple cotton boom linked cotton profits, slavery, and territorial expansion in momentous ways. It examines South Carolina's contested decision to reopen the African slave trade to meet the labor demands of the cotton boom and supply slaves to the nation's new purchase, Louisiana.
Chapter Four Extending Slavery
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter explores the anxieties generated in the region by South Carolina's decision to reopen the foreign slave trade, the rapid expansion of slavery into the Old Southwest, and the German Coast slave insurrection in Louisiana in 1811. It briefly examines the resistance fomented by a coalition of the British, enslaved blacks, and native Americans during the War of 1812, and Andrew Jackson's concomitant rise as the champion of whites who wanted safe access to land, slaves, and cotton profits.
Chapter Seven The Scare
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter describes the Denmark Vesey insurrection scare, the most significant challenge the paternalist movement faced during its insurgent phase. Charleston stood as the central staging ground and ideological epicenter of the paternalist insurgency. At the same time, nowhere was the movement better equipped to defend itself than in Charleston. Given the nature of the attack on paternalism that came as part of the public reaction to the discovery of the Denmark Vesey insurrection plot during the summer of 1822, the movement needed all the strength it could muster to stand its ground.
Chapter Eight Analyzing the Scare
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter examines the reaction of local whites to the Denmark Vesey insurrection plot. The reaction emerged from the information the Charleston public received at the time and the resulting widespread acceptance of the idea that the dangerous plot described in reports issued by Charleston's official investigators had, in fact, matured in Charleston that summer. Whites who defended an alternative version of the scare during the summer and fall of 1822 quickly lost credibility with the Lowcountry public. As Lowcountry whites contemplated the implications of a successful insurrection their midst, their leaders debated the appropriate means of making sure that no future plot could come to fruition. As part of this debate, whites of various persuasions offered both their diagnoses of the scare and proposals to prevent future plots. This public discussion over causes and preventative measures quickly revealed the sharp conflict that emerged between local authorities and the paternalist movement that escalated as the scare and the ensuing reaction unfolded.
Chapter Nine Reacting to the Scare
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter explores the refusal of the South Carolina legislature to adopt many of the draconian control measures recommended by Charleston-area leaders in response to the Vesey scare. Lowcountry leaders then reacted to the legislature's moderation with the formation of an aggressive voluntary organization, the South Carolina Association, charged with protecting the interests and safety of white Charlestonians. The association quickly emerged as the vanguard of proslavery radicalism in the lower South and a sworn enemy of the paternalist movement.
Chapter Ten Discourses of Colonization
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter presents the southern debate over colonization as three parallel discussions. One discussion centered on the disagreement within the upper South over whether colonization should be used to encourage gradual emancipation or simply as a means for reducing the region's large free black population. A second discussion revolved around the dispute between the upper South and lower South over whether colonization was a legitimate means for eliminating some problems related to slavery or merely an abolitionist wedge designed to undermine slavery. The third was a debate between southern and northern colonizationists over the ultimate purpose and preferred pace of the movement.
Chapter Fourteen Ending Free Black Suffrage in North Carolina
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter analyzes North Carolina's decision to disfranchise all free blacks at its 1835 state constitutional convention. The push for disfranchisement of free blacks in North Carolina was led not only by white egalitarians seeking ideological consistency but also by some conservatives eager to free their election districts from the influence of free black voters. These conservatives, who generally opposed constitutional reform, couched their public arguments against free black suffrage in terms of drawing a bright line between white citizens and black denizens much as egalitarians did, though conservatives also expressed the more elitist notion that black disfranchisement would free their election districts from the “corruption” and tendency to mobocracy they associated with free black voting.
Chapter Fifteen Reaction in the Lower South
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter examines the spread of alarm and anxiety across the lower South in the aftermath of the publication of Walker's pamphlet and news of Turner's revolt. In the face of such alarming news, the ongoing contest between paternalists and their critics initially intensified. The paternalists maintained that only their approach could render slavery safe for the lower South, but the movement's opponents launched a fierce offensive, seeking to undermine the paternalist argument in light of open slave violence and aggressive abolitionist threats to slavery from outside the region. Initially, critics of paternalism succeeded in shifting the lower South's focus to the need for tighter control of slaves and free blacks. As a result, they won approval for measures banning the education of slaves and limiting the ability of paternalists to continue their mission to the region's slave population.
Chapter Sixteen Abolition Poison and Southern Antidotes
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter details the broader southern reaction to the abolition mail and petition campaigns crafted by the American Anti-slavery Society. Spreading alarm and producing a call for unity and action, particularly in the lower South, the abolition mail campaign struck many whites in the South as nothing short of a terrorist attack on the region, and the mail and petition campaigns together left more white southerners than ever convinced that, at least on the point of abolition, the South had to meet its critics with one voice.
Chapter Seventeen The Ideological Reconfiguration of Slavery in the Lower South
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter describes and analyzes the fleshing out of the ideological reconfiguration of slavery in the lower South, and explains the final rise of the paternalist movement from insurgency to orthodoxy in the region. Despite the initial setback paternalism suffered from the concerns aroused by the Turner insurrection and the abolition mail campaign, ultimately the ideology's triumph in the lower South owed much to the perception that it offered the most effective counter to the emerging humanitarian critique of slavery as an evil that required immediate redress—a line of argument that lay at the core of the new abolitionist crusade. The lower South's ideological reconfiguration of slavery married the virtues of paternalism as a system for managing enslaved blacks to the economic and political imperatives of independence and egalitarianism for white males. The union was sealed with a public vow to make race the central social distinction in southern society.
Conclusion
Authors: Ford, Jr. Lacy K.
Published: September 2009

This chapter discusses the upper and lower South's respective answers to the slavery question, which lay in different ways of reconfiguring the institution. In the upper South, that reconfiguration was a demographic one. The idea of a demographic reconfiguration of slavery emphasized the gradual whitening of the region and depended heavily on continued lower South demand for slaves and an active internal slave trade. The lower South's reconfiguration was ideological in nature, and it revolved around the embrace of race as the chief justification for slavery, the acceptance of white egalitarianism as the ethos of the region's political culture, and the triumph of paternalism as the lower South's prevailing ideology of slaveholding.
Multivariate Methods in Epidemiology
Authors: Holford Theodore R.
Published: September 2009

Epidemiology provides the scientific basis for much of public health practice, and the revolution in health care and disease prevention indicates that the demand for valuable results from this field will continue to grow. Sound epidemiologic research requires a solid statistical basis for both study design and data analysis. As knowledge about the underlying causes of disease increases, we often see that they have multiple causes, so it is often not possible to limit conclusions to a single factor. Therefore a multivariate approach to data analysis is an essential part of epidemiologic research. The multivariate methods considered in this book involve the simultaneous analysis of the association between multiple attributes of an individual and the risk of a disease. This book aims to address the practical questions of how to approach data analysis. The book is organized in four parts. Part I introduces ways of thinking quantitatively about the disease process. Part II explores some of the computationally direct methods that have long been a part of classical epidemiological data analysis. Separate chapters deal with the analysis of proportions, rates, and semi-parametric approaches from time to failure data. Formal model fitting is considered in much more detail in Part III, which considers not only the analysis of proportions, but also parametric and semi-parametric approaches to the analysis of hazard rates. Part IV deals with special problems that arise when one incorporates aspects of the study design into the analysis, along with approaches to designing a study that will be the right size for addressing the study aims.
Associations between Exposure and Disease
Authors: Holford Theodore R.
Published: September 2009

This chapter begins with a discussion of the strategies for studying disease in a population. It considers the rationale for studying more than one factor at a time. It then discusses the quantitative framework that can guide the approach to formulating studies of disease etiology. An overview of the different parts of the book is presented.
Analysis of Proportions
Authors: Holford Theodore R.
Published: September 2009

This chapter introduces simple methods that can be applied to the analysis of proportions. The first section discusses some typical study designs that give rise to data that can be analyzed in this form. It then discusses various methods for estimating the association between exposure to factors and risk of disease, where the exposure is measured either as simply “yes” or “no,” or in greater detail that actually reflects the level of exposure. Finally, the problem of jointly analyzing putative risk factors is considered by discussing methods for estimating the effect of one factor while controlling another. Exercises are provided at the end of the chapter.
Analysis of Rates
Authors: Holford Theodore R.
Published: September 2009

This chapter discusses methods for testing hypotheses comparing two or more rates, testing for trend, and combining rates over different strata. These methods are directly analogous to methods for analyzing proportions seen in Chapter 3. The chapter also discusses direct and indirect methods for calculating summary rates. Either method could be used to give a reasonable summary of a common multiplicative effect, although the indirect method required an additional assumption that the standard rates also conform to the same underlying multiplicative model. Exercises are provided at the end of the chapter.
Defining Regressor Variables
Authors: Holford Theodore R.
Published: September 2009

The coding of categorical variables can result in very different values for the parameters in a regression model, but when they are correctly understood in term of effects on estimates of risk, they do not affect the overall conclusions. This chapter considers two commonly used coding schemes that use either 0 1 values only or -1 0 1. It examines specially defined variables that allow the consideration of thresholds, as well as questions of whether associations are consistent for all subgroups of the population. It also considers an approach for re-expressing either the regressor variable or the response in order to achieve a relationship that can be described by a generalized linear model. Exercises are provided at the end of the chapter.
Genetics and public health: historical perspectives and current challenges and opportunities
Authors: Omenn Gilbert S.
Published: September 2009

This chapter traces the historical paths that have led to the emergence of public health genetics. The importance of anticipating and addressing the social, ethical, and legal ramifications of scientific advances and of medical and public health applications of genetics is also discussed. The chapter argues for the need to be sensitive to the legacy of the eugenics movement of several decades ago, and to recognize the problems associated with making medical diagnoses (including prenatal diagnoses) when no treatment or preventive intervention is known.
The human genome project: evolving status and emerging opportunities for disease prevention
Authors: Fink Leslie , Collins Francis S.
Published: September 2009

This chapter begins with a discussion of the history and accomplishments of the Human Genome Project. It then considers the implications of gene discovery for understanding human genetic illness and the study of complex disorders. This is followed by discussions of new technologies for genetic analysis and risk assessment and the ethical, legal, and social implications of genetic knowledge.
Epidemiology, molecular biology, and public health
Authors: Dorman Janice S. , Mattison Donald R.
Published: September 2009

This chapter discusses the importance of molecular epidemiology in translating new genetic information from the laboratory to the community. It argues that to meet the demands of the 21st century, we must change the language and expertise of public health to include a stronger focus on molecular epidemiology and its applications for disease prevention. We also need actively to promote continuing education in human genetics, epidemiology, and public health for scientists, practitioners, educators, and individuals in the private sector. Leadership from graduate schools of public health is required to meet these challenges. Strategies for addressing this timely issue are discussed in the chapter.
Public health assessment of genetic predisposition to cancer
Authors: Coughlin Steven S. , Burke Wylie
Published: September 2009

This chapter focuses on cancer prevention and control. Topics discussed include genetic polymorphisms and cancer susceptibility, breast and ovarian cancer susceptibility genes, colorectal cancer susceptibility genes, lung cancer genetic susceptibility, prostate cancer genetic susceptibility, and melanoma genetic susceptibility. Studies of genetic susceptibility to common cancers highlight the need for additional population-based molecular epidemiologic research to define better the contribution of genetic factors to cancer, and to examine interactions with environmental factors amenable to preventive interventions.
Public health assessment of genetic information in the occupational setting
Authors: Schulte Paul A. , DeBord D. Gayle
Published: September 2009

Genetic information refers to information about genes, gene products, or inherited characteristics that may derive from an individual or family member. In the workplace, genetic information is usually the product of genetic screening or genetic monitoring, but may also be derived from a person's medical record. This chapter examines the use of genetic information in the occupational safety and health field in terms of practice, research, and regulation.
Medical and public health strategies for ensuring the quality of genetic testing
Authors: Watson Michael S.
Published: September 2009

Over the past ten to fifteen years, significant changes have made medical genetics among the most exciting and rapidly evolving areas of medicine. This chapter discusses the issues facing this field, including physician and public education, laboratory quality, and the still ill-defined standards by which decisions are made regarding the transition of research information into clinical investigation and on to standard-of-care service. To understand the issues that must be addressed to assure quality testing, some knowledge of the practice and information on its place in health care delivery are valuable.
Public health needs assessment for state-based genetic services delivery
Authors: Fisher Robert M. , Doyle Debra Lochner
Published: September 2009

Needs assessments have rapidly become an important component of all public and private organization strategies, and they must precede policy development and assurance activities. This chapter reviews three basic types of needs assessment: the discrepancy, marketing, and decision-making models. It also reviews examples of genetic needs assessments from different states and discusses their importance.
Access to genetic services in the United States: A challenge to genetics in public health
Authors: Lin-Fu Jane S. , Lloyd-puryear Michele
Published: September 2009

Dramatic advances in genetics in recent decades have opened many opportunities for understanding and promoting health, lowering mortality and morbidity, and preventing diseases. These advances, however, have also posed a grave challenge to the U.S. health care system, which is still neither accessible nor affordable to all. At a time when cost constraint is given top consideration in health care planning, the need to develop the infrastructure for a relatively new type of service—genetic services—has attracted little attention. This chapter argues that integrating genetic services into health programs is a formidable task not only because of the lack of an appropriate infrastructure, but also because certain basic conceptual conflicts and dilemmas first must be resolved.
Delivery of genetic services in developing countries
Authors: Penchaszadeh Victor B.
Published: September 2009

This chapter discusses the priorities and organization of genetic services in the developing world against the background of the realities of underdevelopment. To define goals for genetic services in developing nations, efforts must be made to improve knowledge of the impact of genetic disorders in the community. Epidemiological research should be stimulated to provide better data on the prevalence and types of birth defects, genetic diseases, and genetic predispositions to common diseases at the country level. Issues of population structure (i.e., consanguinity, founder effects, cultural and geographic isolation) must be studied to assess their influence on geographical clusters of genetic diseases. The health beliefs, traditions, and social expectations of communities should also be assessed properly before setting program goals.
Genetics and prevention effectiveness
Authors: Grosse Scott D. , Teutsch Steven M.
Published: September 2009

This chapter is intended to help the reader critically evaluate quantitative prevention-effectiveness studies in genetics and to understand their uses and limitations. No prior knowledge of prevention-effectiveness methods is assumed. The first part presents an overview of the major types of analysis, definitions, underlying concepts, and rules for carrying out prevention-effectiveness analyses. The second half of the chapter applies these rules to case studies of recent economic evaluations of genetic screening, genetic testing, and genetic-test-specific therapeutic interventions.
Impact of genetic information and genetic counseling on public health
Authors: Benkendorf Judith L. , Peshkin Beth N. , Lerman Caryn
Published: September 2009

This chapter reviews the evolution of the genetic counseling process as an integral part of genetic health and medical care. It discusses the settings in which genetic counseling presently occurs and who provides these services. This discussion includes the role of genetic counseling as an adjunct to testing in preconception and prenatal care, as well as in general medicine. The chapter also reviews literature on the impact of various genetic counseling and testing programs on patients' quality of life and health-related behaviors. It concludes with a discussion of the current role of genetic counseling in public health, and an examination of the advantages and disadvantages of a model that addresses and integrates the goals of both fields while maximizing the strengths of each.
Newborn screening for sickle cell disease: public health impact and evaluation
Authors: Olney Richard S.
Published: September 2009

This chapter provides a broad overview of public health aspects of newborn hemoglobinopathy screening in the United States, with special emphasis on epidemiologic efforts to evaluate pediatric outcomes after newborn screening. Despite controversies about cost-effectiveness and ethical quandaries of carrier identification and targeted versus universal approaches, newborn screening programs for hemoglobinopathies in the U.S. are firmly entrenched, at least in part because of strong epidemiological data suggesting that early identification of affected newborns is a rational policy. As prevention-oriented policies are directed toward large populations and manifestations of disease complications change, however, ongoing data collection is needed to ensure the effectiveness of these strategies at the community level.
Public health strategies to prevent the complications of hemochromatosis
Authors: Burke Wylie , Cogswell Mary E. , McDonnell Sharon M. , Franks Adele
Published: September 2009

This chapter reviews current knowledge about the natural history and genetics of hemochromatosis, and considers the implications for public health policy of a transition from enhanced case finding to universal screening. Enhanced case finding can be justified on the basis of current evidence, because a reasonable likelihood of benefit can be inferred when symptomatic individuals are treated. Thus, efforts to increase public and health care provider awareness of hemochromatosis are merited. The educational programs required to increase the early detection of hemochromatosis could also serve as a preparatory step in the development of universal screening programs. The strongest argument in favor of universal screening is the possibility that enhanced case finding will fail to detect affected individuals before irreversible complications of hemochromatosis occur.
Principles and practices of communication processes for genetics in public health
Authors: Condit Celeste M. , Parrott Roxanne L. , O'Grady Beth
Published: September 2009

This chapter describes two basic requirements of the communication processes and outcomes necessary to an ethical and socially responsible use of genetic medicine in a public health framework. It begins by reviewing the reasons that there are exceptional ethical burdens on genetic medicine and then outlines the transactional model of communication and its applications in public health genetics. It concludes by describing research on the effects-based pretesting of the attitudinal effects of public health messages about genetics.
Training in public health genetics
Authors: Caumartin Susan M. , Baker Diane L. , Marrs Carl F.
Published: September 2009

This chapter discusses training in public health genetics. Topics covered include public health education, public health genetics education, and the changing needs of the workplace. It argues that public health educators must assume a leadership role in preparing future public health professionals who will understand and know how to apply the rapidly expanding knowledge and technology in the genetics area to the practice of public health for the achievement of public health goals. In pursuing this mission, it is vital that schools of public health emphasize not only the science of genetics but also the ethical, legal, and social implications.
Consumer perspectives on genetic testing: lessons learned
Authors: Davidson Mary E. , David Karey , Hsu Nancy , Pollin Toni I. , Weiss Joan O. , Wilker Nachama , Wilson Mary Ann
Published: September 2009

The Genetic Alliance—a coalition of consumers, professionals, and support groups concerned with the needs of individuals and families living with genetic conditions—works to educate the general public and providers about the subtle, personal, and familial ramifications of genetic testing. Using the firsthand experiences of its consumer members as a powerful educational tool, the Alliance advocates for the development of genetic testing protocols and dynamic informed-consent standards to ensure autonomous and informed decision making that is founded on current, accurate information at every step of the testing, diagnostic, and treatment-management process. Scientists, ethicists, medical professionals, and other experts routinely play major roles in public policy decision making. The Alliance draws on more than a dozen years of firsthand experience with genetic educational programs for professionals and the public to present consumer perspectives on the policy implications of genetic testing and to demonstrate consumer participation as a value-added component in policy development. This chapter presents a unique window into the personal experiences of five individuals and their families who have had front-line experience with genetic testing.
Neuroepidemiology: Fundamental Considerations
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

This chapter provides a review of essential concepts, including an overview of the nervous system and methods for diagnosing neurologic disease. Knowledge of the unique characteristics of the nervous system is essential to the design and conduct of studies of neurologic diseases. The chapter provides an overview of epidemiologic study design, emphasizing aspects that are particularly important in the investigation of neurologic disease. These sections emphasize the importance of defining the research question, choosing the study population, and defining study outcomes. A particular focus is the unique methodological considerations for studying neurological conditions.
Stroke
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

Stroke is a leading cause of disability and mortality in the United States and other industrialized countries. This chapter discusses important issues that arise in the enumeration of stroke and how differences betweens studies can often be explained by differences in diagnostic or case definition criteria. It describes geographic variations in stroke incidence and mortality, and summarizes a vast literature on stroke risk factors. The chapter is split into two primary sections: ischemic stroke and hemorrhagic stroke and, for each stroke type, non-modifiable risk factors (i.e., genetics, age, sex, race/ethnicity) and modifiable risk factors (smoking, diet, physical activity, hypertension) are discussed. Based on the estimated prevalence of risk factors and their attributable risk for stroke in the United States, it is estimated that a significant proportion of strokes could be prevented through the control of modifiable stroke risk factors. Therefore, part of the chapter is devoted to the design of studies of primary and secondary prevention, and to studies identifying predictors of stroke recurrence.
Migraine and Tension-Type Headache
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

This chapter provides information on the epidemiology of headache, with major sections devoted to migraine and tension-type headache. The clinical features of each headache type are discussed, and details of International Headache Society (IHS) criteria are described. This is followed by a summary of studies related to the incidence and prevalence, and a description of how headache frequency varies by age, sex, race, and geographic region. The chapter provides a summary of risk factors for headache, in addition to describing triggering factors among headache sufferers. The final section is devoted to a discussion of the impact of headaches, including frequency, severity, and health-related quality of life.
Intracranial Neoplasms
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

This chapter begins with a discussion of the taxonomy of primary brain tumors, with a focus on gliomas, meningiomas, and grading systems for these tumors. It discusses methodological challenges for studies of brain tumor incidence including variations in diagnostic practices. It summarizes descriptive epidemiology studies of brain tumor incidence and mortality by age, sex, histologic type, and ethnicity. Factors associated with survival are discussed including histologic grade, tumor location, and extent of surgical resection. Much work remains to discover the causes of the majority of human brain tumors, as established risk factors account for only a small proportion of these tumors. The chapter critiques evidence regarding possible risk factors for brain tumors, including genetic predisposition, ionizing radiation, chemical carcinogen exposure, electromagnetic fields, infections, head trauma, smoking, and diet.
Neurodevelopmental Disabilities
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

The topic of this chapter is neurodevelopmental disabilities, with discussion focused on three prototypic neurodevelopmental disorders: mental retardation, autism, and cerebral palsy. These disorders are highlighted because the epidemiologic knowledge is more advanced; however, many of the important methodologic issues apply to other neurodevelopmental disorders. The chapter discusses the particular research challenges in achieving complete case ascertainment due to the problems of case finding and case confirmation. It presents information about the prevalence of each of these disorders and temporal changes in frequency over time, as well as the possible factors contributing to increased recognition of these disorders. The chapter summarizes investigations of risk factors for each disorder, including genetic factors and possible environmental etiologies.
Prognosis of Neurologic Diseases
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

This chapter covers the topic of prognostic studies and the application of research principles to questions of prognosis. Studies of prognosis are the core of clinical neurology and clinical epidemiology, and are central to the work of clinicians and clinician investigators. Prognosis can be regarded as a set of outcomes and their associated probabilities following the occurrence of some defining event or diagnosis that can be a symptom, sign, test result, or disease. The chapter presents information on study design principles for prognostic studies, common study biases, and statistical analysis considerations.
Clinical Trials in Neurology
Authors: Nelson Lorene M. , Tanner Caroline M. , Van Den Eeden Stephen K. , McGuire Valerie M.
Published: September 2009

This chapter provides extensive coverage of concepts related to controlled clinical trials in neurology. It describes the main issues in clinical trial design, conduct, and analysis, by examples from neurological research. It begins with a summary of the objectives of Phase I through Phase IV trials, followed by a discussion of the commonly used study designs for clinical trials (parallel group design, factorial design, crossover design, N-of-one design). It then describes important principles for the conduct of clinical trials, including methods for recruitment and retention of clinical trial subjects, approaches to minimizing bias due to unblinding, and techniques for monitoring compliance and adverse events. It discusses methods of randomization and choice of primary and secondary measures of treatment outcome and summarizes statistical approaches to clinical trial data, including intent-to-treat analyses, explanatory analyses, per protocol analyses, and on-treatment analyses. Methods for subgroup analyses and planning of interim analyses are also discussed. One section of the chapter is devoted to ethics of controlled clinical trials.
Ethical Dimensions of Health Equity
Authors: PETER FABIENNE , EVANS TIMOTHY
Published: September 2009

This chapter clarifies ethical concepts related to the complex issue of health equity. It discusses the concept of health, its causes, and distribution. It explores questions such as: What is equity in health? How is it linked to social justice? Why should we be concerned with inequities in health anyway? Can moral philosophy inform judgements about health equity? In doing so, the chapter reviews the relevance of existing theories of social justice to the underlying assumption that social inequalities in health are “unjust.” Utilitarianism and egalitarian theories are considered, before discussing the requirements of Rawlsian justice and the philosophical approach of Amartya Sen—the latter two placing the pursuit of health equity in the context of the larger pursuit of social justice.
Neighborhoods and Health: An Overview
Authors: Macintyre Sally , Ellaway Anne
Published: September 2009

This chapter presents an overview of research on neighborhoods and health. Interest in the effects of the local environment on human health began some 2,500 years ago and reached its peak during the public health movements of the mid to late 19th century in Europe and America. Since World War II, much of the focus of public health has been on individual behaviors such as smoking, drinking, diet, and exercise. Recently, there has been a resurgence of interest in the effects on health of the social and physical environment within epidemiology, geography, psychology, and sociology. This renewed interest must not ignore the lessons of the past or lessons from other disciplines such as architecture, urban planning, political science, and economics.
Infant Health: Race, Risk, and Residence
Authors: Collins, Jr. James W. , Schulte Nancy Fisher
Published: September 2009

The prevalence of disadvantages among individual African Americans does not fully explain their poor birth outcomes, nor is there a biological vulnerability specific to African-Americans. This chapter looks beyond individual attributes and explores where and how African-American women live in an effort to understand these enduring inequalities. It focuses on the residents of Chicago, the third most segregated city in the United States.
A Brief Romance with Magic Bullets: René Dubos at the Dawn of the Antibiotic Era
Authors: Cooper Jill E.
Published: September 2009

In 1939, René Dubos announced his discovery of tyrothricin, the first clinically useful antibiotic. Convinced of the power and efficiency of chemotherapeutic wonder drugs, Dubos abandoned his immunological approach to infectious disease in favor of one that privileged cure over prevention. But by 1941 his enthusiasm waned in light of tyrothricin's limitations, and he changed from champion to critic of chemotherapeutic agents. His admonitions against the overzealous use of antibiotics, however, went largely unheeded. As a result, many of his predictions regarding the danger of antibiotic-resistant bacterial strains have been realized in modern medicine. This chapter traces Dubos' research at the Rockefeller Institute that led to the discovery of tryothricin, and his rapid disaffection with over-reliance upon antibiotics.