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PubMed2004

Certificates of confidentiality in research: rationale and usage.

Certificates of confidentiality (COCs) are a tool to protect researchers from being compelled to release identifying information about their subjects. Whereas institutional review board (IRB) review and informed consent procedures are mandatory tools to protect human subjects, COCs are voluntary. There are limited data about who procures COCs and why, and whether they are useful. Three Institutes of the National Institutes of Health (NIH) provided data on 114 research projects that had received COCs. Eighty-three researchers had procured a single COC and 11 researchers had procured 31 COCs. One hundred and four (91%) of the COCs were obtained by researchers at academic sites, and 17 institutions collectively accounted for 82 COCs. The most commonly cited sources of information about COCs came from colleagues (n = 18, 35%) and previous experience (n = 17, 33%). The most common reasons for procuring a COC were that the research involved genetics (n = 28, 54%), the research could lead to social stigmatization or discrimination (n = 22, 42%), or the research could damage an individual's financial standing, employability, or reputation (n = 21, 40%). These findings show that COCs are often congregated within institutions and by particular individuals. This may be because others are unaware of COCs or because others do not believe they are necessary or useful.

Confidentiality↗
PubMed1993

Genetic information and health insurance. Report of the Task Force on Genetic Information and Insurance. NIH/DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research.

One of the ironies in the current health care coverage crisis is that developing more accurate biomedical information could make things worse rather than better. In the current American health care system, information about an individual's risk of disease plays a crucial role for many people in determining access to health care coverage. This link between the likelihood of needing health care and the ability to obtain coverage for that care has the unfortunate result that those most in need may have the greatest difficulty finding affordable health care coverage. New advances in human genetics are transforming medicine by making available increasing amounts of such information about risk. Biomedical science and the delivery of health care are being reshaped by advances in our understanding of human genetics. New insights into health and disease, new diagnostic and prognostic tests and the possibility of new therapies reflect significant investments by the public and by private business and are no longer limited to the uncommon disorders traditionally labeled as "genetic diseases." Among the first products of genetic research is information useful in predicting the likelihood that an individual will develop particular diseases, opening the door both to preventive strategies that we would welcome, such as changes in diet and exercise patterns, and to the unwelcome possibility of genetic discrimination. Injecting information about genetic risks into the current health care system could result in ever more refined risk rating by insurers and ever greater difficulty in finding affordable health care coverage for large numbers of people. At a minimum, people could be discouraged from obtaining genetic information that might be useful in disease prevention and early treatment or for case planning and management because that same information could jeopardize their access to health care coverage in general, or to treatment for a condition excluded from coverage because it was "pre-existing." Under other circumstances people might be compelled to provide genetic information as a condition of obtaining affordable health care coverage. Genetic risk information carries an additional, wider burden because information about an individual's genetic health risks may also be information about the risks of children, parents, brothers, sisters, and other relatives. One suggested approach--providing special protection for genetic information--is unlikely to succeed. This special protection has been suggested because of the relevance of genetic information to family members and its implications for reproductive choices, potential discrimination and stigmatization.(ABSTRACT TRUNCATED AT 400 WORDS)

Discrimination, Psychological↗
PubMed2006

Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement.

The past decade has witnessed considerable growth in the evidence-base from which clinical recommendations for bereavement care can be made. Research now provides guidance to assist clinicians in: a) recognizing differences between complicated and uncomplicated bereavement reactions, b) identifying risk factors that may make certain individuals more vulnerable to bereavement-related complications, c) appreciating and monitoring for potential adverse outcomes associated with bereavement and d) taking actions to prevent or minimize maladjustment to the loss. In this article we distinguish between the course of normal grief and abnormally prolonged, or complicated grief; clarify distinctions between Complicated Grief Disorder and other mental disorders secondary to bereavement; review outcomes associated with Complicated Grief Disorder; describe research on resilience in bereavement; present findings on stigmatization and the use of mental health services among recently bereaved persons; and summarize where the field is with respect to establishing the efficacy and effectiveness of bereavement interventions. Promising new psychotherapies for Complicated Grief Disorder have shown clinical efficacy. Nevertheless, further research is needed to enhance the detection of vulnerable bereaved persons, to promote resilience following significant interpersonal loss, and to tailor interventions to address the attachment issues that lie at the heart of this disorder.

Bereavement↗
PubMed1999

Birth trauma and the pelvic floor: lessons from the developing world.

Urinary incontinence, fecal incontinence, and pelvic organ prolapse are common stigmatizing conditions that afflict women far more often than they afflict men. It has been suggested that childbirth is the most likely factor to explain this great epidemiologic discrepancy between the sexes. Because the widespread availability of high-quality obstetric care through-out the industrialized world has led to precipitous drops in maternal mortality during the 20th century, many of the pathophysiologic mechanisms by which such injuries might arise are not as obvious as they were in times past. It is suggested that by looking at obstetric complications in the developing world, where the natural history of unrelieved obstructed labor is most obvious, it may be possible to shed new light on the pathophysiology of childbirth injury and its relationship to incontinence and prolapse. The spectrum of childbirth injuries resulting from obstructed labor in developing countries is surveyed, and the potential relevance of these findings to the more subtle forms of pelvic floor dysfunction seen in Western women is discussed.

Developing Countries↗
PubMed2004

Effect of patient gender on late-life depression management.

PURPOSE: To determine whether patient gender influences physicians' management of late-life major depression in older and younger elderly patients. METHODS: In 1996-2001, physician subjects viewed a professionally produced videotape vignette portraying an elderly patient meeting diagnostic criteria for major depression, then answered interviewer-administered questions about differential diagnosis and treatment. Patient gender and other characteristics were systematically varied in different versions of the videotape, but clinical content was held constant. This was a stratified random sample of 243 internists and family physicians with Veterans Health Administration (VA) or non-VA ambulatory care practices in the Northeastern United States. Outcomes were whether physicians followed a guideline-recommended management approach: treating with antidepressants or mental health referral or both and seeing the patient for follow-up within 2 weeks. RESULTS: Only 19% of physicians recommended treating depression (12% recommended antidepressants and 7% mental health referral), and 43% recommended follow-up within 2 weeks. Patient gender did not influence management recommendations in either younger old (67 year old) or older old (79 year old) patients (p > 0.12 for all comparisons). CONCLUSIONS: Gender disparities previously documented in the management of major conditions are not seen for the management of depression, a potentially stigmatized condition that does not require resource-intense interventions.

Adult↗
PubMed2005

Quality of life in vascular anomalies.

Hemangiomas and vascular malformations that cause disfigurement or functional limitations may affect the quality life of the affected individual and their families. Negative reaction from strangers, social stigmatization, sadness, stress and low self-esteem are some of the commonly reported effects of having such lesions. Extensive and accurate education about the disease process and advice from support groups may improve quality of life. Psychological intervention may be indicated for some individuals and families.

Hemangioma↗
PubMed2001

HFE gene and hereditary hemochromatosis: a HuGE review. Human Genome Epidemiology.

Hereditary hemochromatosis (HHC) is an autosomal recessive disorder of iron metabolism characterized by increased iron absorption and deposition in the liver, pancreas, heart, joints, and pituitary gland. Without treatment, death may occur from cirrhosis, primary liver cancer, diabetes, or cardiomyopathy. In 1996, HFE, the gene for HHC, was mapped on the short arm of chromosome 6 (6p21.3). Two of the 37 allelic variants of HFE described to date (C282Y and H63D) are significantly correlated with HHC. Homozygosity for the C282Y mutation was found in 52-100% of previous studies on clinically diagnosed probands. In this review, 5% of HHC probands were found to be compound heterozygotes (C282Y/H63D), and 1.5% were homozygous for the H63D mutation; 3.6% were C282Y heterozygotes, and 5.2% were H63D heterozygotes. In 7% of cases, C282Y and H63D mutations were not present. In the general population, the frequency of the C282Y/C282Y genotype is 0.4%. C282Y heterozygosity ranges from 9.2% in Europeans to nil in Asian, Indian subcontinent, African/Middle Eastern, and Australasian populations. The H63D carrier frequency is 22% in European populations. Accurate data on the penetrance of the different HFE genotypes are not available. Extrapolating from limited clinical observations in screening studies, an estimated 40--70% of persons with the C282Y homozygous genotype will develop clinical evidence of iron overload. A smaller proportion will die from complications of iron overload. To date, population screening for HHC is not recommended because of uncertainties about optimal screening strategies, optimal care for susceptible persons, laboratory standardization, and the potential for stigmatization or discrimination.

Alleles↗
PubMed2003

Morphology of floral papillae in Maxillaria Ruiz & Pav. (Orchidaceae).

BACKGROUND AND AIMS: The labellar papillae and trichomes of Maxillaria Ruiz & Pav. show great diversity. Although papillae also occur upon other parts of the flower (e.g. column and anther cap), these have not yet been studied. Labellar trichomes of Maxillaria are useful in taxonomy, but hitherto the taxonomic value of floral papillae has not been assessed. The aim of this paper is to describe the range of floral papillae found in Maxillaria and to determine whether papillae are useful as taxonomic characters. METHODS: Light microscopy, histochemistry, low-vacuum scanning and transmission electron microscopy. KEY RESULTS: A total of 75 taxa were studied. Conical papillae with rounded or pointed tips were the most common. The column and anther cap usually bear conical, obpyriform or villiform papillae, whereas those around the stigmatic surface and at the base of the anther are often larger and swollen. Labellar papillae show greater diversity, and may be conical, obpyriform, villiform, fusiform or clavate. Papillae may also occur on multiseriate trichomes that perhaps function as pseudostamens. Labellar papillae contain protein but most lack lipid. The occurrence of starch, however, is more variable. Many papillae contain pigment or act as osmophores, thereby attracting insects. Rewards such as nectar or a protein-rich, wax-like, lipoidal substance may be secreted by papillae onto the labellar surface. Some papillae may have a protective role in preventing desiccation. Species of diverse vegetative morphology may have identical floral papillae, whereas others of similar vegetative morphology may not. CONCLUSIONS: Generally, floral papillae in Maxillaria have little taxonomic value. Nevertheless, the absence of papillae from members of the M. cucullata alliance, the occurrence of clavate papillae with distended apices in the M. rufescens alliance and the presence of papillose trichomes in some species may yet prove to be useful.

Amino Acids, Aromatic↗
PubMed2005

Anther cap retention prevents self-pollination by elaterid beetles in the South African orchid Eulophia foliosa.

BACKGROUND AND AIMS: Pollination by insects that spend long periods visiting many flowers on a plant may impose a higher risk of facilitated self-pollination. Orchids and asclepiads are particularly at risk as their pollen is packaged as pollinia and so can be deposited on self-stigmas en masse. Many orchids and asclepiads have adaptations to limit self-deposition of pollinia, including gradual reconfiguration of pollinaria following removal. Here an unusual mechanism--anther cap retention--that appears to prevent self-pollination in the South African orchid Eulophia foliosa is examined. METHODS: Visits to inflorescences in the field were observed and pollinators collected. Visitation rates to transplanted inflorescences were compared between a site where putative pollinators were abundant and a site where they were rare. Anther cap retention times were determined for removed pollinaria and atmospheric vapour pressure deficit was recorded concurrently. Anther cap anatomy was examined using light microscopy. KEY RESULTS: Eulophia foliosa is pollinated almost exclusively by Cardiophorus obliquemaculatus (Elateridae) beetles, which remain on the deceptive inflorescences for on average 301 s (n = 18). The anther cap that covers the pollinarium is retained for an average of 512 s (n = 24) after pollinarium removal by beetles. In all populations measured, anther cap dimensions are greater than those of the stigmatic cavity, thus precluding the deposition of self-pollinia until after the anther cap has dropped. An anatomical investigation of this mechanism suggests that differential water loss from regions of the anther cap results in opening of the anther cap flaps. This is supported by observations that as atmospheric vapour pressure deficits increased, the duration of anther cap retention was reduced. CONCLUSIONS: Flowers of E. foliosa are specialized for pollination by elaterid beetles. Retention of anther caps for a period exceeding average visit times by beetles to inflorescences appears to prevent facilitated self-pollination in E. foliosa effectively.

Animals↗
PubMed2006

Phylogenetics of Papaver and related genera based on DNA sequences from ITS nuclear ribosomal DNA and plastid trnL intron and trnL-F intergenic spacers.

BACKGROUND AND AIMS: Representatives from Papaver, Roemeria, Stylomecon and Meconopsis were studied to elucidate phylogenetic relationships between Papaver and these closely allied genera. METHODS: Two molecular data sets were used individually and combined and included sequences from the internally transcribed spacer region (ITS) of 18S-26S nuclear ribosomal DNA and the trnL intron and the trnL-trnF intergenic spacer region of plastid DNA. KEY RESULTS: Parsimony analysis demonstrated that the genus is not monophyletic unless the closely related Roemeria, Stylomecon and Meconopsis cambrica are included in a revised circumscription of Papaver. Three distinct clades are resolved in a combined ITS and trnL-F analysis. Clade 1 consists of Papaver sect. Meconella and Asian Meconopsis. Clade 2 contains a group here identified as Papaver s.s., comprising sections Carinatae, Meconidium, Oxytona, Papaver, Pilosa, Pseudopilosa and Rhoeadium. Clade 3 consists of Papaver sect. Argemonidium and Roemeria refracta. A number of diagnostic indels support these groupings. Within clade 2, sects. Papaver and Rhoeadium are either not monophyletic or lack evidence supporting their monophyly. CONCLUSIONS: The results of this molecular analysis indicate that a number of morphological characters such as valvate capsule dehiscence, dark or light filaments and sessile stigmatic discs have arisen in parallel. The phylogenetic trees are incongruent with the existing taxonomy of Papaver, and a revised classification is suggested.

DNA, Intergenic↗
PubMed2006

Floral anatomy of Paepalanthoideae (Eriocaulaceae, Poales) and their Nectariferous structures.

BACKGROUND AND AIMS: Eriocaulaceae (Poales) is currently divided in two subfamilies: Eriocauloideae, which comprises two genera and Paepalanthoideae, with nine genera. The floral anatomy of Actinocephalus polyanthus, Leiothrix fluitans, Paepalanthus chlorocephalus, P. flaccidus and Rondonanthus roraimae was studied here. The flowers of these species of Paepalanthoideae are unisexual, and form capitulum-type inflorescences. Staminate and pistillate flowers are randomly distributed in the capitulum and develop centripetally. This work aims to establish a floral nomenclature for the Eriocaulaceae to provide more information about the taxonomy and phylogeny of the family. METHODS: Light microscopy, scanning electron microscopy and chemical tests were used to investigate the floral structures. KEY RESULTS: Staminate and pistillate flowers are trimerous (except in P. flaccidus, which presents dimerous flowers), and the perianth of all species is differentiated into sepals and petals. Staminate flowers present an androecium with scale-like staminodes (not in R. roraimae) and fertile stamens, and nectariferous pistillodes. Pistillate flowers present scale-like staminodes (except for R. roraimae, which presents elongated and vascularized staminodes), and a gynoecium with a hollow style, ramified in stigmatic and nectariferous portions. CONCLUSIONS: The scale-like staminodes present in the species of Paepalanthoideae indicate a probable reduction of the outer whorl of stamens present in species of Eriocauloideae. Among the Paepalanthoideae genera, Rondonanthus, which is probably basal, shows vascularized staminodes in their pistillate flowers. The occurrence of nectariferous pistillodes in staminate flowers and that of nectariferous portions of the style in pistillate flowers of Paepalanthoideae are emphasized as nectariferous structures in Eriocaulaceae.

Carbohydrate Metabolism↗
PubMed1993

AIDS in Haiti: 1982-1992.

Haiti was one of the first countries where AIDS was recognized, a burden that led to the stigmatization of an entire nation resulting in serious long-term economic, social, and psychological consequences. Sixty percent of urban hospital beds are now occupied by patients infected with human immunodeficiency virus (HIV). AIDS is the leading cause of death in sexually active adults and increasingly has become a disease of women and children. AIDS threatens to reverse the decrease in infant mortality achieved during the past decade. In spite of educational efforts, the "silent epidemic" continues in all parts of the country and within all strata of society. The current HIV seroprevalence is 10% in urban areas and 5% in rural areas. AIDS is known but not understood; counseling modifies behavior in only 10%-20% of at-risk persons. This distressing situation is likely to worsen in view of the ongoing political crisis since almost all AIDS-education programs are dependent on foreign support.

AIDS-Related Opportunistic Infections↗
PubMedDate not supplied

Selective primary health care: strategies for control of disease in the developing world. V. Leprosy.

Leprosy afflicts 10-15 million people in the world, primarily in tropical and subtropical developing countries. In areas endemic for leprosy, the incidence may reach four to six cases per 1,000 population, and the prevalence of the disease frequently exceeds 10 per 1,000 population in parts of Africa and Asia. While these figures are not high in relation to those for other tropical diseases, many developing countries consider leprosy a major health problem because a significant proportion of cases result in deformity and subsequent social stigmatization. Leprosy comprises a wide spectrum of clinical and pathologic stages that have been classified histopathologically. In polar lepromatous disease there is specific immunologic unresponsiveness of cell-mediated immunity to Mycobacterium leprae antigens, while, in the tuberculoid form of the disease, strong cell-mediated immunity is present but tissue damage seems to be a consequence. This review discusses the detailed immunologic analyses of the histopathology and pathogenesis of the various stages of leprosy. It will be argued that lepromatous leprosy presents an extraordinary model for understanding the mechanisms of immunologic unresponsiveness in humans. The present effectiveness and limitations of chemotherapy in the face of emerging resistance to dapsone are briefly discussed. Recent advances in the development of vaccines are discussed in terms of their immunologic potential and epidemiologic necessity. The implications of an effective prophylactic or immunotherapeutic vaccine used in combination with chemotherapy are also presented.

BCG Vaccine↗
PubMed2006

Epilepsy among the homeless: prevalence and characteristics.

Homelessness is associated with several risk factors for epileptic seizures. Epilepsy is a stigmatizing condition, which can lead to problematic social adjustment and competence. We found a markedly higher prevalence of seizures among the homeless than that estimated in the general population, with a large majority of non-alcoholic etiology. Unexpected proportion of subject taking treatment and compliance rate call for reflection on the optimal management of epilepsy in this population.

Adolescent↗
PubMed2000

Medical and lay views of irritable bowel syndrome.

OBJECTIVES: The purpose of this study was to investigate doctors' and patients' views of irritable bowel syndrome (IBS) in order to assess why problems in the doctor-IBS patient relationship seem to occur. METHODS: A qualitative study was undertaken involving in-depth, semi-structured interviews that were tape-recorded, transcribed verbatim and analysed using the constant comparative method. The subjects comprised 12 doctors, including six GPs and six gastroenterologists, and 14 patients with IBS. RESULTS: Doctors hold two definitions of IBS, one 'public' and akin to a textbook definition, the other 'private' and including experiential knowledge and absorbed prejudices about IBS patients. Doctors are not universally hostile towards IBS patients, although the views of gastroenterologists may tend to be more pejorative than those of GPs. Most doctors experience frustration with IBS, and this is due as much to medical uncertainty and shortage of effective interventions as to intolerance of the personal characteristics of IBS patients. Doctors distinguish between 'good' and 'bad' IBS patients and manage them accordingly. Many patients tend to find their IBS symptoms very troublesome. Patients are more satisfied if they are taken seriously and helped to manage their symptoms, but many feel that they are labelled as neurotic by the medical profession. They tend to feel stigmatized and let down by doctors. CONCLUSIONS: Better partnerships could be created with patients, and better outcomes for IBS might be achieved, if doctors recognized the impact of medical beliefs about IBS on patients. Doctors should offer IBS patients empowering explanations for their disorder.

Adaptation, Psychological↗
PubMed2003

Diversity and linkage of genes in the self-incompatibility gene family in Arabidopsis lyrata.

We report studies of seven members of the S-domain gene family in Arabidopsis lyrata, a member of the Brassicaceae that has a sporophytic self-incompatibility (SI) system. Orthologs for five loci are identifiable in the self-compatible relative A. thaliana. Like the Brassica stigmatic incompatibility protein locus (SRK), some of these genes have kinase domains. We show that several of these genes are unlinked to the putative A. lyrata SRK, Aly13. These genes have much lower nonsynonymous and synonymous polymorphism than Aly13 in the S-domains within natural populations, and differentiation between populations is higher, consistent with balancing selection at the Aly13 locus. One gene (Aly8) is linked to Aly13 and has high diversity. No departures from neutrality were detected for any of the loci. Comparing different loci within A. lyrata, sites corresponding to hypervariable regions in the Brassica S-loci (SLG and SRK) and in comparable regions of Aly13 have greater replacement site divergence than the rest of the S-domain. This suggests that the high polymorphism in these regions of incompatibility loci is due to balancing selection acting on sites within or near these regions, combined with low selective constraints.

Alleles↗
PubMed2006

"You're awfully old to have this disease": experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS.

PURPOSE: Older adults living with HIV infection may be doubly stigmatized, as they are branded by both age as well as HIV status. Through semistructured interviews, this study sought to examine whether older adults with HIV/AIDS experience both ageism and HIV stigma and how those experiences manifest in their lives. DESIGN AND METHODS: This was a qualitative study in which 25 in-depth interviews were completed with adults aged 50 years and older who were living with HIV or AIDS. Purposive sampling was used to recruit these individuals who shared their experiences. Open coding and axial coding of interview transcripts were completed on all interviews, resulting in the development of a framework of these experiences. RESULTS: The majority (68%) of the respondents experienced both ageism and HIV-associated stigma. The experiences were often separate, although some interrelated stigma did occur. Nine themes emerged from the interviews, including rejection, stereotyping, fear of contagion, violations of confidentiality, and internalized ageism. All themes fell into four categories: social discrimination, institutional discrimination, anticipatory stigma, and other. IMPLICATIONS: The research identified themes that may be sources of felt as well as enacted stigma and discrimination related to both aging and HIV. This concept of double jeopardy exists in the lives of the majority of people interviewed and has relevance to the creation of appropriate intervention strategies.

Acquired Immunodeficiency Syndrome↗
PubMed2001

Pharmacists' role in managing sexually transmitted infections: policy issues and options for Ghana.

The debate about extending the role of pharmacists in health care is growing in recognition of the ongoing difficulties experienced by many public sector services. The perceived accessibility and confidentiality of pharmacists makes them particularly attractive to patients for the management of health problems such as sexually transmitted infections (STI) that may lead to stigmatization. Despite growing interest in the subject, there are few documented analyses of the role of pharmacists in low-income countries. In Ghana, pharmacists are acknowledged by the government to be the preferred option for people seeking treatment for STI. A study was conducted to investigate the current role played by pharmacists in Greater Accra Region in the management of STI. On the basis of these findings, training schemes were developed, implemented and evaluated. This paper presents the findings of this operation-research and considers their implications for deciding to what extent and in what way pharmacists should be involved in managing STI in Ghana and other similar country settings. These findings suggest that pharmacists have a crucial role in effective management of STI, particularly in the management of urethral discharge. They may need to limit their management of genital ulcer to referring customers to laboratories and medical practitioners. They also represent a currently under-utilized opportunity for preventive activities. Regulation and quality assurance issues need to be addressed by both pharmacy and medical professions.

Anti-Infective Agents↗