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PubMed1997

Genetic screening and the right not to know.

This article discusses the basic elements of genetic screening and monitoring, the Americans With Disabilities Act of 1990, the constitutional issues, and the possibility of government mandated genetic monitoring or screening. The field of genetics offers the promise of unearthing the causes of a wide range of mysterious diseases and potentially finding their cures. Genetic screening and monitoring will play a large role in the application of these new findings. While these technologies offer great promise for the future of medicine, and the eradication of certain genetically linked diseases, until there are cures for persons with the faulty genes, such knowledge can lead to anxious preoccupation with the ever present disease potential within, and discrimination by employers, insurers, governmental agencies, and health care providers without. Given these unpleasant results of genetic screening or monitoring, it is important to assert the individual's right not to know.

Persons with Disabilities↗
PubMedDate not supplied

Recertification of professional competence. American Board of Ophthalmology.

Recognizing the steady expansion of medical knowledge, the societal desire to ensure the best possible medical care, and governmental concern for verification of physician competence, the American Board of Ophthalmology is preparing to offer a voluntary recertification program for Diplomates of the Board who wish to establish current professional competence. Pertinent to this program, consideration is given to the rationale for periodic recertification, relevant actions by representative specialty boards and the American Board of Medical Specialties, and fuidelines for development of a recertification process by the American Board of Ophthalmology. These guidelines are set forth to provide a basis for study and evaluation by all interested parties. By thoughtful, broadly based, and coordinated consideration, policies will evolve to serve concurrently the best interest of the general public and of the ophthalmic profession.

Certification↗
PubMedDate not supplied

Human resources development for the prevention of blindness in Anglophone West Africa.

As recent as 1986, acute shortage of qualified manpower was one of the major difficulties in the prevention of blindness in Africa. Following the WHO sub-regional workshop on Manpower development for Prevention of Blindness, the West African Health Community in collaboration with the National Prevention of Blindness programmes in Anglophone West Africa made concerted efforts at developing appropriate manpower at all levels of eye care. Eight categories of eye care workers were identified and personnel to population ratios adopted for each. Curriculum was developed and training begun for two new cadres-Primary Eye care Trainers and Diplomate Ophthalmologist. These are expected to boost the training of Integrated Eye Care workers for primary eye care and increase surgical services, especially cataract surgery rates, at secondary eye care level respectively. There are constraints and difficulties but the support provided by two non-government organisations (Sight Savers International and Christoffel Blindenmission) had been helpful in overcoming some of these. Significant progress has been made in the last decade in developing the required manpower but large deficits still remain. The political will, commitment and co-operation of all stakeholders would be required to achieve the desired targets for the next decade.

Africa, Western↗
PubMed2004

Between persuasion and compulsion: Smallpox control in Brooklyn and New York, 1894-1902.

Two major outbreaks of smallpox occurred in Brooklyn and New York around the turn of the twentieth century. Health officials moved aggressively to contain the disease, conducting mass vaccinations from house to house and in workplaces. Although these programs were ostensibly voluntary, the manner in which they were conducted was often coercive, giving many people the impression they had no choice but to submit. Officials portrayed their programs as voluntary because they lacked a clear legal basis for their actions and because they believed this was the most effective strategy for gaining public cooperation. This essay examines the events that surrounded a series of legal cases challenging the use of coercive measures to enforce vaccination during and after the smallpox epidemic of 1894, and the repercussions that this litigation had on disease-control efforts and popular attitudes toward vaccination and other measures. The cases described here were part of an extensive body of nineteenth-century jurisprudence on vaccination that was crucial for the evolution of public health police powers in general, and of vaccination policy in particular.

Coercion↗
PubMed1989

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↗
PubMed2005

Participant characteristics predicting voluntary early withdrawal from a multidisciplinary program providing home-delivered meals and dietitian/social work case management to homebound elders.

We examine whether baseline characteristics of participants enrolled in a multidisciplinary program providing home-delivered meals and dietitian/social work case management to homebound seniors predicted voluntary early withdrawal. Sixty-nine participants voluntarily withdrew early and 111 completed the project. Six hypotheses were based on a conceptual framework incorporating (1) agreement between project elements and needs/preferences of individuals and (2) whether participants would improve and no longer require or desire the intervention. Three of the hypotheses were supported by means of logistic regression analysis. Voluntary early withdrawers at baseline: (1) were more mobile, (2) ate less often, and (3) responded that food tastes good less often. The results suggest that carefully considering the interaction of potential participant characteristics and project interventions will improve nutrition project retention.

Activities of Daily Living↗
PubMed1996

Normative and prescriptive criteria: the efficacy of organ transplantation allocation protocols.

Normative criteria adopted to assure just, equitable, and efficient allocation of donor organs to potential recipients has been widely praised as a model for the allocation of scarce medical resources. Because the organ transplantation program relies upon voluntary participation by potential donors, all such programs necessarily rely upon public confidence in allocation decision making protocols. Several well publicized cases have raised questions in North America about the efficacy of allocation procedures. An analysis of those cases, and the relevant technical literature, suggest consistent structural deficits exist in the organ allocation process as it is applied by many individual transplantation centres. These irregularities are based upon both the failure of rank waiting as a method to guarantee just treatment and a general failure to recognize the extent to which prescriptive criteria--social values--are commonly used to screen potential organ transplant candidates. Resulting idiosyncratic determinations, and a devaluation of rank waiting as a criterion, raise fundamental questions regarding justice, fairness, and equability in the application procedure at large. To correct these structural problems in organ allocation procedures, a multicriterion model defining prescriptive criteria through the Analytic Hierarchy Process (AHP) is proposed.

Consensus↗
PubMed1982

A survey to evaluate parental consent as public policy for neonatal screening.

Most states currently have laws which result in compulsory neonatal screening practices, despite a widespread consensus that participation in genetic services and programs should be voluntary. In 1976, Maryland adopted a regulation designed to respect parents' rights to refuse neonatal screening by imposing a parental consent requirement. The results of a study designed to evaluate the effects of this regulation are reviewed here. Many health care providers were unaware of the parental consent regulation. However, hospitals were generally in compliance with the technical stipulations of the regulations. There was little evidence that the regulation resulted in additional costs to the health care system, either in terms of hospital staff time or in terms of loss of efficiency in the number of infants screened. Mothers affected by the regulation were largely in favor of being informed about neonatal screening and learned a significant amount of new information from the disclosure process. They were almost evenly divided on whether they favored parental consent.

Adult↗
PubMedDate not supplied

The HIV antibody test: why gay and bisexual men want or do not want to know their results.

Beginning in the latter part of 1985, 2,047 gay and bisexual men who were enrolled in the Pitt Men's Study, the Pittsburgh cohort of the Multicenter AIDS Cohort Study (MACS), were invited by mail to learn the results of their antibody test for HIV infection--human immunodeficiency virus infection. Participants were asked to complete and return a questionnaire designed to assess the factors influencing their (a) decision about learning the results, (b) recent sexual behavior, (c) knowledge about acquired immunodeficiency syndrome (AIDS), and (d) attitudes toward AIDS risk reduction. Of those men, 1,251 (61 percent) accepted the invitation, 188 (9 percent) declined, and 608 (30 percent) failed to respond. Fifty-four percent of the cohort subsequently learned their results. There were no significant differences in demographic, behavioral, and attitudinal characteristics or HIV seroprevalence between the men who accepted and those who declined. However, significant demographic differences were noted between the men who responded to the invitation versus those who did not; the latter group was composed of a greater proportion of men who were younger, nonwhite, and less educated. The most frequently cited reason (90 percent) why men wanted their test results was to determine if they had been infected with HIV. Of those who declined, 30 percent cited concerns about the psychological impact of learning about a positive result as being the most important factor for their decision. The two most frequently selected reasons for declining were the belief that the test is not predictive of the development of AIDS (48 percent) and concern about the worry that a positive result would produce (48 percent). These findings are discussed in the context of a nationwide, voluntary HIV screening program for gay and bisexual men.

Acquired Immunodeficiency Syndrome↗
PubMed2005

A survey of pregnant women using isotretinoin.

BACKGROUND: Isotretinoin is a known human teratogen, causing birth defects and/or subnormal cognitive performance in prenatally-exposed children. METHODS: A survey was conducted among women who called teratology information services throughout North America. Using a structured questionnaire, women with an isotretinoin-exposed pregnancy were prospectively interviewed before the outcome of the pregnancy was known. RESULTS: Almost 1/4 of the women surveyed (24%; 8/34) did not recall having contraception counseling before starting their medications. Once therapy was initiated, 62% (21/34) recalled using a birth control method, but only 29% (6/21) recalled using 2 forms of birth control, as specified by the voluntary pregnancy prevention programs. Monthly pregnancy tests were not always conducted during treatment, as recalled by the surveyed women (56%; 19/34). As many as 24% (8/34) of the women surveyed recalled that they were not screened using 2 pregnancy tests before receiving a prescription, another recommendation of the programs. Only a small number of the women (30%; 6/20) in the United States recalled being enrolled in any manufacturers' voluntary pregnancy prevention survey. CONCLUSIONS: Results demonstrate that essential components of voluntary pregnancy prevention programs were not consistently followed, which resulted in fetal exposures.

Abnormalities, Drug-Induced↗
PubMedDate not supplied

Characteristics of clinical laboratory technician students and effects on program outcome.

OBJECTIVE: To characterize student attrition in CLT education programs and relate program outcome (graduate, voluntary withdrawal, or academic dismissal) to student characteristics in three clusters of variables: academic, background and demographic characteristics, and environmental factors. DESIGN: Longitudinal, prospective study using a written survey and follow-up data collection. SETTING: Not applicable. PARTICIPANTS: 1527 students from 61 CLT academic-based educational programs located across the U.S. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed a forced-choice written survey eliciting demographic and background information and measuring variables related to their involvement with the academic program and environmental factors external to the college. Program outcome groups: graduates, voluntary withdrawals, and academic dismissals were compared on each variable. RESULTS: Graduates of CLT programs differ significantly from both academic dismissals and voluntary withdrawals on variables from all three variable clusters. CONCLUSION: Student characteristics exhibited early in CLT programs may help identify those students who are at risk of academic failure or voluntary withdrawal. Knowledge of factors associated with lack of CLT program persistence may help educators design successful intervention programs to enhance retention.

Longitudinal Studies↗
PubMed1995

Maternal acceptance of voluntary human immunodeficiency virus antibody testing during the newborn period with the Guthrie card.

In order to provide the opportunity for women delivering newborns to have human immunodeficiency virus (HIV) testing we piloted a hospital-based voluntary HIV testing program during the newborn period using the Guthrie card. During the study period 789 women were offered newborn HIV antibody testing. Test acceptance during the newborn period (61.0%) was comparable to that reported for the prenatal period (60.6%). Overall 77.4% of women were tested in the newborn period or reported being tested in the prenatal period. Prenatal test acceptance best predicted newborn HIV test acceptance (odds ratio, 3.37; 95% confidence interval, 2.40 to 4.74). When compared to HIV testing during the newborn period prenatal HIV testing is preferable because it enables the recognition of HIV infection early during pregnancy and allows the mother the option to elect zidovudine therapy and potentially prevent infection in her newborn. However, when prenatal HIV testing is not routinely made available or cannot be assured, women should be offered the opportunity to be tested during the newborn period.

AIDS Serodiagnosis↗