The route to a national health policy lies through the states.

National health program legislation has been becalmed in the Congress for almost 80 years. Despite periodic cries of "crisis," legislation never emerges from committee. Periodically, campaigns have been mounted without success. Tactical efforts to circumvent direct action by legislating bits and pieces of related programs, Medicare and Medicaid, health maintenance organization support, and pre-budgeting, have complicated operation of the medical care system and stimulated intractable cost inflation. For the first 150 years of American history, responsibility for public health and welfare legislation rested with the states. Most public health policies originated in a state or a few states and then later became national legislation. The state efforts were, in effect, natural experiments. After the Depression and the flood of funding from the federal government in subsequent years, the states faded as innovators. It is proposed that funding a few state models to restimulate state initiative in this regard will provide a more effective route to a national health program.     

Extended Producer Responsibility in the United States

Extended producer responsibility (EPR) is a policy approach that requires manufacturers to finance the costs of recycling or safely disposing of products consumers no longer want. This article describes the evolution of EPR policies in the United States, focusing on the role of states as policy actors. For their part, federal lawmakers have not embraced EPR policies except to remove some barriers to state‐level initiatives. In the two‐decade period from 1991 to 2011, U.S. states enacted more than 70 EPR laws. In addition, manufacturers have implemented voluntary programs to collect and recycle products, but those efforts have proven largely ineffective in capturing significant quantities of waste products. With the help of new coalitions of diverse interest groups, recently states have renewed efforts to establish effective EPR programs, enacting 40 laws in the period 2008–2011. Several state initiatives suggest a more promising future for EPR.     

Survey of States' 2000 Soils Cleanup Standards for Petroleum Contamination

The establishment of cleanup standards for petroleum-contaminated soils (PCS) at the state level in the U.S. has had a fairly recent history beginning in the mid-1980s. Kostecki et al. (1988) surveyed the 50 states in 1985 and found of the 22 states that reported having established levels of cleanup for PCS, only five states considered the levels formal. The remaining 18 states considered the levels informal with 8 states considering establishing formal levels. Only 1 state had a formal numerical cleanup standard, and 3 had informal numerical standards. One state directly applied federal groundwater standards directly to soils. A follow-up survey in 1987 (Bell et al., 1989) indicated the rapid development of myriad different cleanup standards between and within states, including action levels, remediation goals, cleanup levels, etc. With the implementation of EPA's Office of Underground Storage Tanks final rules for regulating underground storage tanks in 1988 and the existing state of confusion regarding policies, rules and regulations for the cleanup of PCS at the state level, the Association for the Environmental Health of Soils (AEHS) began conducting state-by-state surveys of environmental regulatory agencies in 1990 to determine cleanup standards for PCS for use by the regulated community. The following tables represent AEHS' compilation of state data for PCS cleanup standards for 2000. The Survey was conducted by telephone interviews and submission of written information by the appropriate listed agencies. Many of the states' programs have changed to or are in the process of changing to Risk Based Corrective Action (RBCA) approaches. Thus, the format of the summaries are less standardized than past surveys in order to accurately reflect the states' program. Every attempt has been made to accurately represent states' cleanup standards, however, users should be cautioned to the limitations of compiling complex regulatory information into tabular form. The information should only be used as a reference guide and legal, economic or technical decisions should be based on specific information obtained directly from the appropriate agency in each state for each specific site.     

Guidelines for the Retention,Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis: Statement of the Council of Regional Networks for Genetic Services

These guidelines provide scientific information for policy development by state health departments considering appropriate use of newborn screening specimens after screening tests are finished. Information was collected, debated, and formulated into a policy statement by the Newborn Screening Committee of the Council of Regional Networks for Genetic Services (CORN), a federally funded national consortium of representatives from 10 regional genetics networks. Newborn screening programs vary widely in approaches and policies concerning residual dried blood spot samples (DBS) collected for newborn screening. Recognition of the epidemiological utility of DBS samples for HIV seroprevalence surveys and a growing interest in DBSs for DNA analysis has intensified consideration of issues regarding retention, storage, and use of residual DBS samples. Potentially these samples provide a genetic material “bank” for all newborns nationwide. Their value as a resource for other uses has already been recognized by scientists, administrators, and judicial officials. Programs should promulgate rules for retention and use of residual newborn screening DBS samples based on scientifically valid information. Banking of newborn samples as sources of genetic material should be considered in light of potential benefit or harm to society.     

Hemoglobin E disorder: Newborn screening program

Hemoglobin E (Hb E) disorder is an important kind of hemoglobinopathy. It can be seen around the world with the highest prevalence in Southeast Asia. The screening for this disorder becomes the public health policies in many countries. The screening can be performed in several population groups. The newborn screening program for Hb E disorder is an important issue in pediatric genetics. In this brief review, the author discusses on important laboratory tests for screening for Hb E disorder in newborn.     

Prognostic value of X-chromosome inactivation in symptomatic female carriers of dystrophinopathy

Background

Neonatal screening for Pompe disease has been introduced in Taiwan and a few U.S. states, while other jurisdictions including some European countries are piloting or considering this screening. First-tier screening flags both classic infantile and late-onset Pompe disease, which challenges current screening criteria. Previously, advocacy groups have sometimes supported expanded neonatal screening more than professional experts, while neutral citizens' views were unknown. This study aimed to measure support for neonatal screening for Pompe disease in the general public and to compare it to support among (parents of) patients with this condition. The study was done in the Netherlands, where newborns are not currently screened for Pompe disease. Newborn screening is not mandatory in the Netherlands but current uptake is almost universal.

Methods

A consumer panel (neutral group) and (parents of) patients with Pompe disease (Pompe group) were sent information and a questionnaire. Responses were analyzed of 555 neutral and 58 Pompe-experienced informants who had demonstrated sufficient understanding.

Results

87% of the neutral group and 88% of the Pompe group supported the introduction of screening (95% CI of difference -10 to 7%). The groups were similar in their moral reasoning about screening and acceptance of false positives, but the Pompe-experienced group expected greater benefit from neonatal detection of late-onset disease. Multivariate regression analysis controlling for demographics confirmed that approval of the introduction of screening was independent of having (a child with) Pompe disease. Furthermore, respondents with university education, regardless of whether they have (a child with) Pompe disease, were more likely to be reluctant about the introduction of screening than those with less education, OR for approval 0.29 (95% CI 0.18 to 0.49, p < 0.001).

Conclusions

This survey suggests a rather high level of support for newborn screening for Pompe disease, not only among those who have personal experience of the disease but also among the general public in the Netherlands. Optional screening on the basis of informed parental consent is probably unrealistic, underlining the need for new guidelines to help policymakers in their consideration of newborn screening for broad phenotype conditions.     

School Screening for Scoliosis—One Experience in California Using Clinical Examination and Moiré Photography

In 1980 the legislature of the state of California mandated that school screening programs for scoliosis be implemented. This law resulted in variations in methods and efficacy of the programs. One such program using clinical examination and moiré photography was administered to adolescent girls in two secondary schools in Santa Clara County. The findings of 10% of the clinical examinations were ruled to be “positive,” 18% on moiré photography alone and 8% on both examinations. The correlation between the two diagnostic procedures was poor (r = .16). Follow-up was done to determine the outcome of the “positive” cases. In all, 25% of the children classified as having scoliosis had no medical follow-up one year from the request by the screening program team. The documented false-positive rate was 15% based on the screening examination. Definitive radiographic evaluation was reported in very few of the positive cases.Our experience shows the weakness of local programs that have no subject follow-up. It is suggested that public education may be a more effective solution than mass school screening mandates.     

Higaûnon Resistance and Ethnic Politics in Northern Mindanao1

The root causes of armed aggression among Higaûnon people in northern Mindanao, Philippines, have changed over the centuries. Prior to the 20th century, its primary aim was raiding for slaves and for redress of personal grievances. At the turn of the 20th century, armed aggression became tied to the loss of ancestral lands, an issue which grew more acute as Mindanao became the target of government resettlement policies and economic ventures. In the 1970s, Higaûnon aggression culminated in the ‘Higaûnon War’ against commercial logging on their ancestral lands. Rhetoric employed in this ‘war’ changed over the years, from limited personal grievances to Marxist ideology to radical environmentalism, all of which have engendered violent responses from the government. Recently, Higaûnons have conflated environmentalist rhetoric with expressions of their ethnic identity, and emphasised their economic as well as cultural dependence on the land. This peaceful strategy has produced some positive results but, because of continuing land insecurity, it has not completely eliminated the prospect of armed aggression in the future.     

Regulation of offspring and the Roman Catholic Church

Abstract

The 1976 enactment of the National Sickle Cell Anemia, Cooley's Anemia, Tay‐Sachs, and Genetic Disease Act may mark the emergence of a national policy on mass genetic screening. The law includes provisions intended to protect persons who are tested for genetic traits in screening programs operated with government funds. Two key features are (1) guaranteed access to competent genetic counseling and (2) strict confidentiality of test results. Because genetic screening will be conducted through state public health departments, I surveyed the states to determine how they were currently providing access to genetic counseling and protection of genetic data. The responses indicated that (1) there is an extreme heterogeneity of counseling services, and (2) that most states have not developed programs to safeguard genetic data.     

Aspects of wetland law and policy in Australia

The existence of laws and policies in Australia that affect wetland protection and rehabilitation has been ascertained. There is a diverse range of environmental legislation, primarily at the state level, that potentially affects wetlands. There are environmental planning instruments made under legislation in New South Wales and Western Australia, which are specifically directed to the protection of wetlands. These are legislative-backed mechanisms providing legal protection to wetlands. Whilst there is no national policy on wetlands, a draft Commonwealth policy has been circulated and is expected to be released in final form in February 1997. New South Wales is the only state with a current wetlands policy, whilst some other states have draft policies. These policies do refer to wetland rehabilitation. The present federal government indicated it wished to finalize a national wetlands policy in the lead up to its election in March 1996. This is not likely to happen soon and any national policy will probably be an implementation framework for the policies of individual governments. It is suggested that a commonwealth policy, whilst useful in providing consistency in commonwealth government decision making affecting wetlands, does not go far enough. Given that only one state in Australia has a wetland policy, it may take the formulation of a national policy to get the remaining states and territories in Australia to finalize their own policies.     

Issues in newborn screening

Newborn screening aims at the earliest possible recognition of disorders so that intervention with effective treatment can prevent the most serious consequences of the disorder. However, of several thousand known genetic disorders, therapy is presently available for only a small proportion of them. Newborn screening was first applied to phenylketonuria (PKU). Presently, newborn screening programs have been implemented in 26 countries for different diseases. However, potential problems in newborn screening programs that make implementation of newborn screening programs difficult include quality assessment, concerns about professional and technical competence, and ethical considerations. It has been shown that in the process from sampling the newborn to reporting of the screening results most errors are made in the pre- and post-analytical phases. It appears that much more could be done for the fetus if genetic screening and diagnostics could be accomplished early in pregnancy rather than after birth.     

Technical and Policy Challenges in Developing and Implementing Risk-Based Environmental Regulations

The reform in environmental regulations being considered at both federal and state levels is intended to enhance the value and effectiveness of a rule by incorporating risk assessment and cost benefit analysis in the rule making process or regulatory implementation. Although a risk based approach may not provide a panacea to all environmental problem solving, it offers some obvious advantages over the status quo. In particular, it establishes a scientifically defensible basis for evaluating the trade off between risks, costs and benefits in making prudent environmental decisions and developing effective regulatory policies. This paper presents a conceptual framework for risk reduction, summarizes the current status in risk-based legislation at the federal level, provides examples of how various states are using risk based approaches in their regulatory programs, addresses aspects of technical and policy challenges in rule making and other policy and enforcement decisions and provides suggestions for meeting these challenges.     

Preemptive legislation inhibits the anthropogenic spread of an aquatic invasive species, the rusty crayfish (Orconectes rusticus)

The enactment of legal policies is often recommended to prevent anthropogenic introductions of invasive species. In this paper, we evaluated the effectiveness of proactive state legislative policies in deterring colonization by rusty crayfish (Orconectes rusticus) and the expected spread into previously uninvaded states using network-based spatial analysis. We found that the presence of regulations was positively associated with the presence of rusty crayfish (p = 0.027), but often regulations were put into effect subsequent to the invasion. Regulations that did not explicitly prohibit transport, applied to specific drainages, or prohibited only rusty crayfish were not effective. However, preemptive legislation was effective in reducing the likelihood of invasion, if regulations prohibited the transport of all live crayfish species between water bodies, as only 1 state which passed such legislation prior to invasion by rusty crayfish was subsequently colonized (S = 12, p = 0.031). Five states are likely to be invaded by rusty crayfish via range expansion across interstate drainages, and dispersal rates suggest that all of these states could be colonized within 10 years. While it is unlikely that regulations will prevent dispersal-based invasion across state lines through shared drainages, preemptive legislation can significantly reduce anthropogenic spread of aquatic invasive species between drainages and effectively retard the expansion of rusty crayfish. Our results suggest that the most effective form of legislation is one that does not require individuals to identify species, thus we recommend states enact policies that explicitly prohibit the transport of all live crayfish between water bodies.     

Dutch Consumers’ Willingness to Pay for Broiler Welfare

This article analyzes Dutch consumers’ willingness to pay (WTP) for the welfare of broiler chickens and the consequences for nonhuman animal welfare policies. Using data from a discrete-choice experiment and a random parameter logit model, this study showed that consumers particularly value opportunities for outdoor access and the method used for anesthesia before slaughter. The WTP was also positively related to the number of consumers buying the same product, indicating that they experience the public-good dilemma. Moreover, the WTP was higher if consumers knew that animal welfare practices were subject to public or collective supervision. Women, people with more education, those with higher income, and nonreligious people had relatively high WTP values. For 87.5% of the respondents, the WTP exceeded the price difference between a broiler with a higher level of animal welfare and a regular chicken. The findings suggest that the Dutch market for broiler chickens can be improved by raising consumer confidence in the labeling system.     

Early Childhood Music Education in Australia: A Snapshot

Policy for early childhood music education (birth to eight years of age) in Australia covers a complex and diverse range of curriculum guidelines and legislation relating to the contexts of day care, preschool, and the early years of school. Australian models and policies vary from state to state and according to setting. Furthermore, early childhood education is constantly changing and evolving, responding to new practices, altered government priorities and funding, and community needs. In this article, the author aims to provide a snapshot of the situation by reviewing and analyzing educational policies, teacher training, and providers of early childhood music programs as well as suggesting some future directions.     

The Wilderness Act and Fish Stocking: An Overview of Legislation, Judicial Interpretation, and Agency Implementation

Many high-elevation lakes in designated wilderness are stocked with native and nonnative fish by state fish and game agencies to provide recreational fishing opportunities. In several areas, this practice has become controversial with state wildlife managers who support historical recreational use of wilderness, federal wilderness managers who assert that stocking compromises some of the ecological and social values of wilderness, and different public groups that support one or the other position. Herein we examine this controversy from the perspective of the 1964 Wilderness Act, its judicial interpretation, the policies of the federal agencies, and formal agreements between federal and state agencies. Although some state stocking programs restore native fish populations, other programs may compromise some of the ecological and social values of wilderness areas. Further, although current federal regulations recognize state authority for fish stocking, judicial interpretation gives federal agencies the authority for direct involvement in decisions regarding fish stocking in wilderness. Where there are differences of opinion between state and federal managers, this judicial interpretation strongly points to the need for improved cooperation, communication, and coordination between state wildlife managers and federal wilderness managers to balance recreational fishing opportunities and other wildlife management activities with wilderness values. Received 28 March 2000; Accepted 16 August 2000.     

Making the health care system 'safe' for persons with HIV infection or AIDS.

If health care reform is implemented in states and nationally, the safety of this process needs to be examined for persons with human immunodeficiency virus (HIV) infection or the acquired immunodeficiency syndrome (AIDS). Reform should assure ongoing prevention and transmission control of HIV and continuous coverage of medical costs for persons ill with HIV or AIDS. These persons currently benefit from various state and federal categoric programs designed to assure access to preventive and personal care services. Washington State has passed health care reform legislation that envisions integrating these programs to provide a system of population-based and personal health care. This legislation was analyzed using existing epidemiologic and entitlement information about persons with HIV infection or AIDS in the state to assess its effect. The relationship between public health and personal care services will be a central concern for those with HIV infection or AIDS, and complete coverage of this group may be achieved relatively late in the process of implementing health care reform. Health personnel planning under health care reform will affect the delivery of HIV- and AIDS-related services. Including treatment of AIDS in the basic benefit package merits particular attention. These issues parallel those being faced by the nation as a whole as it seeks to ensure epidemic disease control and compassionate care for long-term disabling illness if health care reform is implemented.     

Private and Public Eugenics: Genetic Testing and Screening in India

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. I refer to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention.

Newborn screening for Pompe disease: an update, 2011

There is mounting evidence in support of universal newborn screening for Pompe disease. Early treatment of children with infantile Pompe disease, prior to clinical diagnosis, is clearly of benefit in prolonging survival and improving cardiac and motor function. Several testing methods applicable to newborn screening using dried blood spots have been described and several are currently being tested in pilot screening programs. Although challenges remain, particularly in identification of the best strategy for follow-up and management of later onset Pompe disease, these challenges can surely be overcome as they have been with other disorders added to the newborn screening panel. It is anticipated that the results of the several pilot programs currently ongoing or in the planning stages in the United States will provide the data necessary to recommend universal newborn screening for Pompe disease for all infants.