Addressing consumer grievances in medicine: policies and practices of newborn screening programs in the United States

Newborn screening programs collectively administer the largest genetic testing initiative in the United States. The redress of grievances is an important mechanism for consumers to provide input into clinical and public health programs. In this study, we evaluated mechanisms for addressing consumer grievances in newborn screening programs. To do this, we surveyed all 50 state plus the District of Columbia newborn screening programs by questionnaire regarding protocols for receipt and redress of problems reported by parents of newborns and ascertained the existence and nature of complaints and how complaints were documented and addressed. Pertinent state and federal legislation and regulation were also reviewed. Six of 49 newborn screening programs reported having formal policies for handling consumer grievances. Four states reported having pertinent legislation or regulation. Thirty-eight of 49 states reported having received complaints from 1993 to 1995. Thirteen of 49 newborn screening programs reported that they actively seek feedback from consumers. Consumer grievances ranged from minor complaints to potentially life-threatening concerns. In general, complaints are managed on an ad hoc basis; formal policies are typically lacking. As newborn screening programs affect a vast number of Americans, a proactive and comprehensive approach, including solicitation of consumer feedback, could benefit both newborn screening programs and the public served by them.     

Strength in diversity: a cross-disciplinary approach to graduate training in chemical biology

Chemical biology graduate programs that are jointly organized by chemistry and life science departments can offer a stimulating 'bicultural' training environment for students from diverse backgrounds. However, communication, flexibility and responsiveness are crucial for effectively structuring such programs.     

Report on the Moscow symposium on biological research in schizophrenia

Abstract

Genetic counseling, second trimester amniocentesis, reliable techniques for analyzing fetal amniotic fluid and selective abortion together have the potential to prevent a variety of serious birth defects. Advances in technique and/or changing patterns of childbearing may place a large number of women in age groups where genetic counseling programs are recommended. However, attitudes toward abortion may be a critical variable in ascertaining the potential of genetic counseling programs to reduce birth defects. If opposition to abortion is based on a moral commitment, greater awareness of genetic counseling programs will lead to opposition to these programs. If attitudes toward abortion are based upon an evaluative process, such opposition is less likely to occur. Using a sample of women from the Rochester, New York, area (N = 1,616) whose attitudes toward abortion match U.S. estimates, we find that the greater the knowledge about prenatal screening, the less prevalent are attitudes opposed to abortion in circumstances necessary for birth defect reduction. This relationship holds when controlled for religion and family size. We conclude that educational and counseling programs concerning the potential benefits of prenatal screening are unlikely to arouse opposition to these programs.     

A View of Current Evaluative Practices in Instrumental Music Teacher Education

The purpose of this study was to examine how instrumental music educator skills are being evaluated in current undergraduate programs. While accrediting organizations mandate certain elements of these programs, they provide limited guidance on what evaluative approaches should be used. Instrumental music teacher educators in the College Music Society (n = 303) supplied data about their respective programs through an online survey. Participants reported using written and verbal feedback, self-evaluation, and rubrics most frequently. Similar evaluation processes used across program courses or experiences, such as rubrics and ePortfolios, were described by 35 percent of the music teacher educators. Most programs culminated in a semester-long student teaching period, during which preservice teachers were observed and evaluated by university supervisors three to four times. Weak correlations were indicated between some evaluative practices and music teacher educators’ expectations for program graduates’ music educator skills. Implications for music teacher education programs and suggestions for establishing evaluation policies are discussed.     

An Update on the Louisiana and Texas Rigs-to-Reefs Programs in the Gulf of Mexico

Abstract

The Louisiana and Texas Rigs-to-Reefs programs enjoy widespread public, industry, and government support and have become models for similar programs around the world. Louisiana’s Rigs-to-Reefs program is the largest in the world, and since its inception in 1986 about 363 oil and gas platforms have been donated, or on average about 12 structures per year. Texas’s Rigs-to-Reefs program started in 1990, and since this time about 154 structures have been donated, or about six structures per year. A summary update of the Louisiana and Texas reef programs is provided, along with recent changes in legislative activity. Donation trends and statistics are reviewed. The Rigs-to-Reefs programs are unlikely to see donation activity above historic levels, and both programs should start planning for a future where the income generated from future projects diminishes.     

International service learning programs: ethical issues and recommendations

Inequities in global health are increasingly of interest to health care providers in developed countries. In response, many academic healthcare programs have begun to offer international service learning programs. Participants in these programs are motivated by ethical principles, but this type of work presents significant ethical challenges, and no formalized ethical guidelines for these activities exist. In this paper the ethical issues presented by international service learning programs are described and recommendations are made for how academic healthcare programs can carry out international service learning programs in a way that minimizes ethical conflicts and maximizes benefits for all stakeholders. Issues related to project sustainability and community involvement are emphasized.     

Localization predictions for gene products involved in non-host resistance responses in a model plant/fungal pathogen interaction

The technologies for researching the interactions between plants and pathogens have evolved through small molecule extractions, enzyme analyses, gene cloning, mutational genetics, anti-sera-specific labeling, and beyond. This position paper demonstrates the use of primarily two predictive programs (SignalP and LOCtree) of the more than 24 existing computer programs, in deriving useful information from the N-terminal or total sequences of both host and pathogen gene products. The genes selected are known to be of importance in a non-host resistance model. In this model, pea is the non-host and expresses resistance to an “inappropriate” pathogen, a pathogen of bean. The usefulness of this technology increases as more sequences are known and the programs are re-defined. The predictive programs are not infallible, but are a useful supplement to other localization determinations. They can also uncover some unforeseen functions or properties of gene products related to their inherent potential for secretion or cellular localization. A selected sampling of gene products involved in race-specific resistance was also evaluated. Some disclaimers related to the N-terminal-based prediction programs and some factors that might alter their accuracy are also discussed. A position presented herein is that there has been an over estimation of the communication barriers observed cytologically and an under appreciation for how the inherent sequences of the protein product of a gene can determine its ultimate destination.     

Transmission of important chromosomal regions under selection revealed in rice pedigree breeding programs

Genetic analysis across a whole plant genome based on pedigree information offers considerable potential for enhancing genetic gain from plant breeding programs through quantitative trait loci (QTL) mapping and marker-assisted selection. Here, we report its application for graphically genotyping varieties used in Chinese japonica rice (Oryza sativa L.) pedigree breeding programs. We identified 34 important chromosomal regions from the founder parent that are under selection in the breeding programs, and by comparing donor genomic regions that are under selection with QTL locations of agronomic traits, we found that QTL clustered in important genomic regions, in accordance with association analyses of natural populations and other previous studies. The convergence of genomic regions under selection with QTL locations suggests that donor genomic regions harboring key genes/QTL for important agronomic traits have been selected by plant breeders since the 1950s from the founder rice plants. The results provide better understanding of the effects of selection in breeding programs on the traits of rice cultivars. They also provide potentially valuable information for enhancing rice breeding programs through screening candidate parents for targeted molecular markers, improving crop yield potential and identifying suitable genetic material for use in future breeding programs.     

Review of trap-and-haul for managing Pacific salmonids (Oncorhynchus spp.) in impounded river systems

High-head dams are migration barriers for Pacific salmon Oncorhynchus spp. in many river systems and recovery measures for impacted stocks are limited. Trap-and-haul has been widely used in attempts to facilitate recovery but information from existing programs has not been synthesized to inform improvements to aid recovery of salmonids in systems with high-head dams. We reviewed 17 trap-and-haul programs regarding Pacific salmon to: (1) summarize information about facility design, operation and biological effects; (2) identify critical knowledge gaps; and (3) evaluate trap-and-haul as a current and future management tool. Existing programs are operated to address a range of management goals including restoring access to historical habitats, temporarily reducing exposure to dangerous in-river conditions, and reintroducing ecological processes upstream from dams. Information gathered from decades of operation on facility design criteria and fish handling protocols, and robust literature on fish collection and passage are available. While many aspects of trap-and-haul have been evaluated, effects on population productivity and sustainability remain poorly understood. Long-term and systematic studies of trap-and-haul outcomes are rare, and assessments can be confounded by concurrent management actions and broad ecological and climatic effects. Existing data suggest that performance and effectiveness vary among programs and over various time scales within programs. Although critical information gaps exist, trap-and-haul is an important management and conservation tool for providing Pacific salmonids access to historical habitats. Successful application of trap-and-haul programs requires long-term commitment and an adaptive management approach by dam owners and stakeholders, and careful planning of new programs.

     

Use of microsatellite data and pedigree information in the genetic management of two long-term salmon conservation programs

In this paper, we describe the utility of microsatellite data and genetic pedigree information to guide the genetic management of two long-term conservation programs for endangered populations of salmon: Snake River Sockeye Salmon, Oncorhynchus nerka, and inner Bay of Fundy Atlantic Salmon, Salmo salar. Both programs are captive broodstock (live gene banking) programs for endangered populations of salmon. In order for these programs to be successful for recovery efforts, genetic change, including accumulation of inbreeding, loss of genetic variation, and adaptation to captivity, must be minimized. We provide an overview of each program, describe broodstock selection and pairing for spawning, and discuss how pedigree data are being used to evaluate different management practices. While there are inherent species and programmatic differences, both of these programs use widely accepted genetic conservation strategies (minimize mean kinship, reduce variance in family size, minimize inbreeding in the next generation, maintain large census and effective population size) to potentially mitigate some unintended side-effects associated with the rearing of small populations in captivity. These case studies highlight the benefits and practical limitations of applying these strategies in the genetic management of salmon, and may be used to inform other conservation programs.     

Feeding neural networks in the mollusc Aplysia

Aplysia feeding is striking in that it is executed with a great deal of plasticity. At least in part, this flexibility is a result of the organization of the feeding neural network. To illustrate this, we primarily discuss motor programs triggered via stimulation of the command-like cerebral-buccal interneuron 2 (CBI-2). CBI-2 is interesting in that it can generate motor programs that serve opposing functions, i.e., programs can be ingestive or egestive. When programs are egestive, radula-closing motor neurons are activated during the protraction phase of the motor program. When programs are ingestive, radula-closing motor neurons are activated during retraction. When motor programs change in nature, activity in the radula-closing circuitry is altered. Thus, CBI-2 stimulation stereotypically activates the protraction and retraction circuitry, with protraction being generated first, and retraction immediately thereafter. In contrast, radula-closing motor neurons can be activated during either protraction or retraction. Which will occur is determined by whether other cerebral and buccal neurons are recruited, e.g. radula-closing motor neurons tend to be activated during retraction if a second CBI, CBI-3, is recruited. Fundamentally different motor programs are, therefore, generated because CBI-2 activates some interneurons in a stereotypic manner and other interneurons in a variable manner.     

Management of insecticides for use in disease vector control: Lessons from six countries in Asia and the Middle East

Interventions to control the vectors of human diseases, notably malaria, leishmaniasis and dengue, have relied mainly on the action of chemical insecticides. However, concerns have been raised regarding the management of insecticides in vector-borne disease-endemic countries. Our study aimed to analyze how vector control insecticides are managed in selected countries to extract lessons learned.A qualitative analysis of the situation of vector control insecticides management was conducted in six countries. Multi-stakeholder meetings and key informer interviews were conducted on aspects covering the pesticide lifecycle. Findings were compared and synthesized to extract lessons learned. Centrally executed guidelines and standards on the management of insecticides offered direction and control in most malaria programs, but were largely lacking from decentralized dengue programs, where practices of procurement, application, safety, storage, and disposal were variable between districts. Decentralized programs were better at facilitating participation of stakeholders and local communities and securing financing from local budgets. However, little coordination existed between malaria, visceral leishmaniasis and dengue programs within countries. Entomological capacity was concentrated in malaria programs at central level, while dengue and visceral leishmaniasis programs were missing out on expertise. Monitoring systems for insecticide resistance in malaria vectors were rarely used for dengue or visceral leishmaniasis vectors. Strategies for insecticide resistance management, where present, did not extend across programs or sectors in most countries. Dengue programs in most countries continued to rely on space spraying which, considering the realities on the ground, call for revision of international guidelines.Vector control programs in the selected countries were confronted with critical shortcomings in the procurement, application, safety measures, storage, and disposal of vector control insecticides, with implications for the efficiency, effectiveness, and safety of vector control. Further international support is needed to assist countries in situation analysis, action planning and development of national guidelines on vector control insecticide management.     

Federal communication about obesity in the Dietary Guidelines and checkoff programs

The new Dietary Guidelines for Americans focus on obesity prevention. They recommend increased consumption of whole grains, fruits, vegetables, fish, and low-fat dairy products, within a balanced diet whose total calories have been moderately reduced. Meanwhile, other well-known and well-funded federally sponsored consumer communications promote increased total consumption of beef, pork, and dairy products, including energy dense foods such as bacon cheeseburgers, barbecue pork ribs, pizza, and butter. These latter communications are sponsored by the federal government's commodity promotion programs, known as "checkoff" programs. The programs are established by Congress, approved by a majority of the commodity's producers, managed jointly by a producer board and the U.S. Department of Agriculture, and funded through a tax on the producers. The federal government enforces the collection of more than 600 million US dollars annually in mandatory assessments, approves the advertising and marketing programs, and defends checkoff communication in court as the federal government's own message-in legal jargon, as its own "government speech." Federal support for promoting fruits and vegetables is small by comparison. The checkoff programs recently have become more clearly identified as federal programs. After a recent decision by the U.S. Supreme Court upholding the constitutionality of the checkoff programs, calls for consistency with the Dietary Guidelines may get louder. The current inconsistencies in federal communication undermine the effectiveness of the Dietary Guidelines as an antidote to the shortcomings of the private sector market for information about weight and obesity.     

DNAssist: the integrated editing and analysis of molecular biology sequences in windows

MOTIVATION: The programs currently available for the analysis of nucleic acid and protein sequences suffer from a variety of problems: Web-based programs often require inconvenient reformatting of sequences when proceeding from one analysis to the next, and commercial-console-based programs are cost prohibitive. Here, we report the development of DNASSIST:, an inexpensive, multiple-document, interface program for the fully integrated editing and analysis of nucleic acid and protein sequences in the familiar environment of Microsoft Windows.     

The ethics of population policy: emphasizing female sterilization in the third world

Rapid population growth in the Third World is a major social and economic problem, with attempts having been made to reduce the rapid growth rate through national family planning programs. Policies used by the programs, especially those concerning female sterilization, need to be examined to determine whether they are ethically acceptable. Such an analysis of the ethics of family planning policies raises awareness of not only the population problem, but also of the potential which exists for violating human rights when attempts are made to reduce population growth. The analysis also points to the need which exists in the Third World to create family planning programs which protect basic human rights. The population problem, reproductive rights, family planning programs, ethical principles, the ethics of incentives, alternatives, and decreasing maternal mortality are discussed.     

Possible involvement of central pacemakers in clinical disorders of movement.

This review considers the evidence for possible involvement of central nervous system pacemaker neurons in several clinical disorders of movement. Two basic types of tremor are discussed from this point of view, i.e., 4--7/sec parkinsonian tremor, of possible thalamocortical origin, and 7--11/sec essential tremor of possible olivo-cerebellar origin. The importance of motor programs and abnormalities in their utilization are considered with reference to the loss of motor function in parkinsonism (? loss of motor programs), and the inappropriate release of such programs as a possible basis for the involuntary movements seen in other movement disorders, such as chorea, athetosis, dystonia, and hemiballismus. The possible role of pacemaker neurons controlling such programs is considered. Finally, the subject of locomotion and the pacemaker model of the spinal locomotor pattern generator for stepping are considered in relation to clinical disorders of gait. While critical evidence is lacking for pacemaker inovlvement in any of these disorders, their possible role is emphasized.     

Lessons from seven sustainability indicator programs in developing countries of Asia

Sustainability indicator programs in developing countries are the poor cousin of ecological indicator research. While an enormous number of indicators for the monitoring of sustainable development exists, few meta-evaluations on these measurements have been conducted in developing countries. Yet, researchers developing new programs face the question: how shall we design our monitoring instrument to respond to the local challenges.By presenting a qualitative meta-performance evaluation of seven sustainability indicator programs on the municipal level in developing countries of Asia, we identify crucial success factors in this contribution. The research draws on 41 expert interviews in Indonesia, Thailand, China, and India, as well as on program-related documents. In the presented case studies, local contexts are intended to be diverse: obtained results should map success factors in different settings. A context-related list of good-practice factors is derived from the interview material via a Qualitative Content Analysis and assessed against the data.We identify crucial strengths and weaknesses of sustainability indicator programs in six dimensions and link the success factors to their contexts. The results include innovative approaches to indicator types, data collection and data quality control, and a correlation between the anchoring of programs in approved development plans and long-term implementation. The results can provide valuable guidance to users of existing sustainability indicator programs and planners of new programs.     

HIV Treatment as Prevention: Issues in Economic Evaluation

Meyer-Rath and Over assert in another article in the July 2012 PLoS Medicine Collection, “Investigating the Impact of Treatment on New HIV Infections”, that economic evaluations of antiretroviral therapy (ART) in currently existing programs and in HIV treatment as prevention (TasP) programs should use cost functions that capture cost dependence on a number of factors, such as scale and scope of delivery, health states, ART regimens, health workers'' experience, patients'' time on treatment, and the distribution of delivery across public and private sectors. We argue that for particular evaluation purposes (e.g., to establish the social value of TasP) and from particular perspectives (e.g., national health policy makers) less detailed cost functions may be sufficient. We then extend the discussion of economic evaluation of TasP, describing why ART outcomes and costs assessed in currently existing programs are unlikely to be generalizable to TasP programs for several fundamental reasons. First, to achieve frequent, widespread HIV testing and high uptake of ART immediately following an HIV diagnosis, TasP programs will require components that are not present in current ART programs and whose costs are not included in current estimates. Second, the early initiation of ART under TasP will change not only patients'' disease courses and treatment experiences—which can affect behaviors that determine clinical treatment success, such as ART adherence and retention—but also quality of life and economic outcomes for HIV-infected individuals. Third, the preventive effects of TasP are likely to alter the composition of the HIV-infected population over time, changing its biological and behavioral characteristics and leading to different costs and outcomes for ART.