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HIV infection, pregnant women, and newborns: A policy proposal for information and testing.

As the public health impact of human immunodeficiency virus (HIV) infection in women and children has increased, so has interest in screening pregnant women and newborns for evidence of HIV infection. However, screening of pregnant women and newborns raises profound moral, legal, and policy issues. In this article, we present and defend a detailed 10-point program of policy recommendations for both pregnant women and newborns. We advocate informing all pregnant women and new mothers about the HIV epidemic and the availability of testing.

AIDS Serodiagnosis

The prevention of acquired immunodeficiency syndrome in the United States. An objective strategy for medicine, public health, business, and the community.

Human immunodeficiency virus (HIV) is one of the most virulent infectious agents ever encountered. This virus, estimated to kill up to a half of those infected, has spread to more than 1 million Americans. There is no safe and effective treatment. Nor is there a vaccine. From our understanding of HIV transmission, further spread of the virus can be stopped by the use of various techniques. The combined use of education-motivation-skill building, serologic screening, and contact tracing/notification could eliminate or substantially reduce transmission. To accomplish this reduction an immense concerted effort by physicians, public health practitioners, business, and community organizations is required to get across the simple prevention messages. Those messages are: Any sexual intercourse (outside of mutually monogamous or HIV antibody-negative relationships) must be protected with a condom. Do not share unsterile needles or syringes. All women who may have been exposed should seek HIV-antibody testing before becoming pregnant and, if positive, avoid pregnancy. Only through a concerted, vigorous, and sustained prevention program that deals frankly with this problem will those individuals at risk be reached and motivated to take personal responsibility to protect themselves. Without such an effort, acquired immunodeficiency syndrome will continue to kill ever-increasing numbers of Americans.

Acquired Immunodeficiency Syndrome

Structured educational program for staff development.

The development of a mandatory continuing education program for the pharmacy staff of a 675-bed hospital with 10 decentralized pharmacy satellites is described. The therapeutic topics selected for presentation were antibiotics, immunology and adverse drug reactions, diabetes mellitus and acid-base disorders. The format for each subject included a pretest of basic knowledge, a comprehensive lecture, a tape recording, supplemental handout material and readings, and a posttest. Posttests were scheduled three to four weeks following lectures to allow preparation time. Questionnaires were used to evaluate acceptance of the program. Posttest scores for each of the four topics were significantly better than pretest scores (p less than or equal to 0.0001). Questionnaire responses indicated that 97% of the participants believed the program to be worthwhile, and 94% voted to continue the series. The success and acceptance of this approach to continuing education support its application to a comprehensive program of staff development.

Chicago

Reducing unnecessary psychiatric consultations for informed consent by liaison with administration.

The frequency of a psychiatric consultation being requested to assess a patients' capacity to give informed consent varies among institutions, with most recent surveys reporting a frequency of between 3% and 8% of all consultations. At Montefiore Medical Center, a hospital policy was interpreted as mandating such consultations for all patients with possible or even definite lack of decisional capacity. From 1987 to 1988, 55% of all psychiatric consultations in the institution were for consent. Only 9% of the consent patients seen had an Axis I diagnosis other than organic mental syndrome (OMS). Because many of these consultations were believed to be unnecessary, with patient clearly able or unable to give consent, the consultation service worked first with administration to modify the guidelines, and then educated the medical and nursing staff as to when consultation was indicated. With this program, the number of consent consultations fell from 958 in 1988 to 177 in 1990, representing a major saving of staff time and third-party billings. In this era of cost containment and outside review of professional practices, psychiatrists must take responsibility for identifying areas where patient services and billings for them are not justified by clinical indications.

Aged

Ethical issues in testing for differential sensitivity to occupational hazards.

This study examines the ethical aspects of designing preventive health strategies in the workplace that rely on biochemical indexes of worker susceptibility. It analyzes the benefits and risks of this type of occupational testing, and stresses the desirability of guidelines for the use of hypersusceptibility testing in preemployment screening. The primary value of using such programs to identify previously unsuspected hazards in working environments is underscored. The report proposes elements for effective guidelines that can permit the orderly development of hypersusceptibility tests. Further study is needed to validate these technologies; to review the legal elements of consent and disclosure requirements; to assure continuation of equal employment opportunity; to provide legally enforceable protections of workers as research subjects; and to identify the extent, if any, of possible social and psychological harms imposed by such testing.

Beneficence

Genetic screening: marvel or menace?

Genetic screening is a systematic search in the population for persons of certain genotypes. The usual purpose is to detect persons who themselves or whose offspring are at risk for genetic diseases or genetically determined susceptibilities to environmental agents. Is genetic screening a marvel about to free us from the scourge of genetic disease or a menace about to invade our privacy and determine who may reproduce? There are three different types of genetic screening. Newborn screening identifies serious genetic disease at birth, permitting prompt treatment to prevent mental and physical retardation. Fetal screening and prenatal diagnosis identify genetic disease in the fetus permitting selective termination of pregnancy and the opportunity to have children free of defects detectable in utero. Carrier screening identifies individuals heterozygous for a gene for a serious recessive disease who may be at risk for affected offspring. The challenge to society is to provide (by way of cost-effective programs) expert services, including genetic counseling and follow-up, to all who may benefit, to ensure confidentiality and freedom of choice, and to avoid misunderstanding and stigmatization. It is recommended that the objective of screening programs should be to maximize the options available to families at risk rather than to reduce the incidence of genetic diseases. Whenever possible, the providers of these services should be the providers of primary health care. Urgently needed are a greater awareness of avoidable genetic diseases on the part of primary care providers and efforts to familiarize the public with the basic concepts of human genetics through the public school system.

Amniocentesis

The readiness of health profession students to comply with a hypothetical program of forced migration of a minority population.

The readiness of Jewish Israeli medical, psychology, and social work students to cooperate in a hypothetical government program involving expulsion of Arabs from Israel was explored via research scenarios that pointedly used terms reminiscent of Holocaust events. Strong moral sensitivity was expected on the part of the study subjects as both Jewish Israelis and vocationally committed to human welfare. The authors argue that the readiness of as many as one-third of the sample to "follow orders" is a disturbing sign, calling for greater vigilance in defense of human rights and values.

Attitude of Health Personnel

A call for action. The Pepper Commission's blueprint for health care reform.

After a year of deliberation and investigation, the Pepper Commission recommended action to ensure that all Americans would have health insurance protection in an efficient, effective health care system. Because it believes that action is urgent, the commission would build universal coverage by securing, improving, and extending the combination of job-based and public coverage we now have. Reform would entail the following elements: a combination of incentives and requirements that would guarantee all workers (with their nonworking dependents) insurance coverage through their jobs; replacement of Medicaid with a new federal program that would cover all those not covered through the workplace and workers whose employers find public coverage more affordable; guaranteed affordable coverage for employers--through reform of private insurance, tax credits for small employers, and the opportunity to purchase public coverage; a minimum benefit standard for private and public plans that would cover preventive and primary services as well as catastrophic care and would include cost sharing, subject to ability to pay; and a combination of public and private sector initiatives to promote quality and contain costs.

Cost Control

The ethics of selectively marketing the health maintenance organization.

Health Maintenance Organization (HMO) administrators have been accused of engaging in 'selective marketing'. That is, through such strategies as tailoring the benefits package of the program or advertising in styles or in media that do not appeal to certain 'undesirable' audiences, the administrator can minimize the percentage of persons in the HMO who are heavy users of health care services. By means of analyzing what 'insurance' is (philosophically) and what it means for something to be a free market commodity, the author argues that, as long as American society chooses to regard health insurance as a commodity or service of the free market. the use of such strategies is within the moral rights of health administrators. The author concludes by noting some morally undesirable results of treating health insurance as a market commodity.

Capitalism

Newborn screening for hemoglobinopathies: the benefit beyond the target.

As a result of New York State's Newborn Screening Program 4,565 neonates with trait hemoglobinopathies were identified and 3,200 families were notified of the results of testing their infants in New York City in 1982. Of the 1,531 families (2,190 parents) tested and counseled, 22 parents were diagnosed with sickle cell disease and 39 couples were found to be at-risk for having a child with sickle cell disease. Amniocentesis was performed in 14 of the 28 at-risk pregnant women and three of the four affected pregnancies were terminated. MCH-331001-01 to 04

Anemia, Sickle Cell

HIV antibody testing among adults in the United States: data from 1988 NHIS.

Data collected from 21,168 adults using the 1988 AIDS supplement to the National Health Interview Survey were examined to determine awareness of and experience with HIV antibody testing in the United States. Three-fourths of adults knew of the blood test for HIV antibodies; awareness was lower among Blacks, Hispanics, older adults, and those less educated. Overall, 17 percent of adults had been tested; of these, 73 percent because of blood donation, 14 percent through other non-voluntary programs (such as military induction), and 16 percent sought testing voluntarily. While a smaller proportion of Black and Hispanic adults had been tested, they were more likely than their White non-Hispanic counterparts to have been tested voluntarily. Persons who reported belonging to groups with high-risk behaviors were also more likely to have been voluntarily tested. Most of those tested voluntarily received their test results, but only one-third also received prevention information. Three percent of adults plan to be tested voluntarily in the next year; about half will seek testing through their doctor or health maintenance organization.

AIDS Serodiagnosis

HIV screening and counseling for intravenous drug abuse patients. Staff and patient attitudes.

At least one third of patients enrolled in a methadone maintenance treatment program are willing to comply voluntarily with screening for and counseling about human immunodeficiency virus (HIV). A questionnaire about knowledge, attitudes, and behavior concerning acquired immunodeficiency syndrome was answered anonymously by 79% (46) of the clinical staff and 67% (868) of the enrolled patients. On their own initiative, 21% of the patients had already received voluntary anonymous HIV screening and brief counseling, seldom discussing the result with the staff. Approximately 90% of the staff and a majority of the patients (72%) thought a voluntary HIV screening program should be offered to all patients. Almost all staff (98%), but only 50% of the patients, felt the HIV test results should be known to physicians, nurses, and counselors at the clinic. Few staff members (15%) believed that patients had changed their sex behavior; more (48%) felt that needle sharing was reduced. Patients believed methadone patients in general had changed their sex behavior (49.2%) and reduced needle sharing (62%) to prevent becoming infected. Patients reported statistically significant reductions both in number of sex partners and in personal needle sharing during the past year.

Adult

Ethical issues in the prevention and treatment of HIV infection and AIDS.

The epidemic of infection with the human immunodeficiency virus (HIV) and the acquired immunodeficiency syndrome (AIDS) poses a major ethical question: How can we control the epidemic and the harm that it causes without unjustly discriminating against particular social groups and without unnecessarily infringing on the freedom of individuals? This question pertains to three spheres of public policy in the United States: public health, the delivery of health care, and research. In the public health sphere, vigorous educational efforts will be required, as will modified approaches to intravenous drug use, prostitution, and homosexual and bisexual sexual activity. Carefully targeted, voluntary testing and screening programs should be coupled with counseling and with guarantees of confidentiality and nondiscrimination where these are appropriate. Both health care workers and the health care system have a moral obligation to provide care to people with HIV infection, but heroic self-sacrifice should not be required provided that infection control precautions are observed. Patients with neurological involvement and terminally ill patients will benefit from statutes allowing recognition of advance directives about preferred modes of care or nontreatment. There is a moral imperative to perform intensive research directed toward the understanding, treatment, and prevention of HIV infection and AIDS. The research process will raise challenging ethical questions.

Acquired Immunodeficiency Syndrome

Ethical and social aspects of risk predictions.

This paper reviews past, present and future social and ethical considerations of screening carriers of autosomal disorders and other heterozygotes. A body of ethical and social guidance has evolved in the 1970's and 1980's for screening. The values of voluntaristic participation and informed consent are high. The goal of programs should be to provide couples, families, and individuals with knowledge respecting their reproductive choices. The dangers are coercive strategies, stigmatization, and careless communication of risk information. It is assumed that the number of autosomal carrier states that are screenable will undoubtedly increase as will states of heterozygosity that cause susceptibility to common diseases. Before the end of the century, something approaching a "biopsy of the human genome" will be a practical reality. To balance the potential for harmful psychological and social effects of so much new genetic knowledge, new efforts must be made to find treatments for progeny affected by recessive disorders. Maternal and paternal screening, prenatal diagnosis and treatment will be increasingly linked in the future. This paper will report on a case of fetal therapy for congenital adrenal hyperplasia as a paradigm for the future. The argument will be made that society ought to put a higher priority on prenatal care and prevention of disorders of prematurity than genetic disorders with a low frequency, lest genetic screening be distorted by unfounded concern about eugenics.

Adrenal Hyperplasia, Congenital

Mandated choice. The preferred solution to the organ shortage?

BACKGROUND: A critical shortage of organs is perhaps the major barrier facing transplantation today. Adopting a system of presumed consent or mandated choice are among the solutions proposed. Under presumed consent, organs may be removed after death without explicit consent, unless the deceased had previously objected or the family objects at the time of death. Under mandated choice, all adults would be required to decide for themselves whether they wish to donate on their deaths and their decisions would be controlling. METHODS: To see if educated young people would support these proposals, I carried out two surveys at the University of Maryland, College Park, Md, of a total of 418 students who were at least 18 years of age. RESULTS: An overwhelming 90% would support mandated choice while a smaller percentage, just over 60%, would support presumed consent. The vast majority believe that the family should not be able to override the previously expressed wishes of their recently deceased loved one. Unfortunately, only a minority of respondents had discussed organ donation with their families and even fewer had signed donor cards. CONCLUSIONS: Even young, educated people frequently fail to consider organ donation prospectively and this is a major barrier to organ retrieval. While presumed consent and mandated choice are designed to deal with this serious problem, mandated choice seems preferable and would likely receive widespread support. Therefore, I suggest that a small scale trial of mandated choice be undertaken as soon as possible in the hope of finding an acceptable system that will quickly and efficiently increase the supply of desperately needed organs.

Adult

Requirements or incentives by government for the use of long-acting contraceptives. Board of Trustees, American Medical Association.

Following the approval of the long-acting contraceptive levonorgestrel (the Norplant Contraceptive System) for use by women, government officials have required or proposed uses of levonorgestrel that are problematic. One court ordered a woman convicted of child abuse to use levonorgestrel as a condition of her probation; legislators have proposed that women on welfare be paid to use levonorgestrel. Court-ordered use of long-acting contraceptives because of child abuse raises serious questions about a person's fundamental rights to refuse medical treatment, to be free of cruel and unusual punishment, and to procreate. The state's compelling interest in protecting children from abuse may be served by less intrusive means than imposing contraception on parents who have committed child abuse. If government benefits were based on the use of long-acting contraceptives, individuals would have to assume a potentially serious health risk before receiving their benefits. Government benefits should not be made contingent on the acceptance of a health risk.

Adult