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A presumed right not to know has been claimed in several discussions about testing for genetic diseases or genetic risks in families of populations. In this paper, ethical problems arising from the implementation of a possible right not to know are examined.
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There has been considerable interest recently in scientific misconduct. Although much has been written and discussed about specific cases, very little, if any, research has been carried out on the process of fraud. An understanding of this aspect can contribute much to methods of detection and lead to recommendations for preventing misconduct and for implementation of appropriate sanctions where fraud has been detected and proved. In this article I initiate a study of the process of fraud using a series of case studies. Hypotheses are generated by methods pioneered by Peirce and most recently developed and thoroughly discussed by Glaser and Strauss under the name of grounded theory. Some illustrations of what can be learned from such studies are included.
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Explore the source record for details and available documents.
Explore the source record for details and available documents.
Decision making in uremia therapy requires that patients be provided with a fair assessment of their course if untreated or if managed by any of several acceptable alternatives. Enthusiastic overselling of any treatment or intimidation of patients to accept a local regimen is unacceptable practice. Suiting patient to treatment requires time, patience, an acceptance of the patient as a partner in evaluating options.
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The prevailing legal and ethical opinion that rationing decisions must always be disclosed to patients is countered. Although conventional informed consent law could theoretically extend to decisions to decline treatment because of costs, it has not yet done so. Moreover, abandonment law does not prohibit declining treatment for economic reasons. A new theory of economic informed consent would stipulate that when patients make informed decisions to purchase less expensive health insurance, they are consenting in advance either to limiting marginally beneficial treatment or to waiving their right to be informed of particular decisions not to treat. Whether this will prove workable or will be accepted by the courts depends on the specifics of the enrollment disclosures, the range of choices given to subscribers, and their capacity to understand them.
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As children living with human immunodeficiency virus (HIV) survive into adolescence and young adulthood, attention to the relationship of diagnosis disclosure to psychological functioning, interpersonal relationships, and HIV prevention is needed. This exploratory study describes the level of adolescents' diagnosis disclosure to family, friends, and potential sexual partners, and the relationship between disclosure and psychosocial variables.
This study addressed the perceptions of stigma and disclosure behavior of HIV-seropositive mothers. Eighty-eight HIV-seropositive women in New York City completed two independent measures of stigma, the Perceived Stigma Scale and the Devaluation-Discrimination Measure. Disclosers (67%) and nondisclosers (33%) were similar in most sociodemographic characteristics-marital status, race, religion and employment, with the exception of age and education. Significant differences were found between disclosure groups in the use of secrecy as a stigmamanagement tool and in perceived devaluation-discrimination associated with an HIV diagnosis. Nondisclosers to children were significantly more likely than disclosers to use secrecy as a stigma management tool (t =-2.76; p =.01), and to feel devalued and discriminated against as a result of HIV serostatus (t = 3.11; p =.01). Disclosure of parental HIV serostatus to children is an important aspect of continuous care and custody planning. Secrecy and perceptions of devaluation and discrimination related to HIV diagnosis should be seen as barriers to disclosure of serostatus to children.
This article addresses the factors a provider needs to consider when evaluating whether to voluntarily disclose billing errors or billing fraud. It outlines procedures for the Office of the Inspector General's formal voluntary disclosure program as well as mechanisms for correcting routine billing errors with a carrier.
BACKGROUND: Increasing number of children with perinatally acquired HIV-infection are now surviving into school age and adolescence. Disclosure of diagnosis to these children has become an important clinical issue. Clinical reports and studies from other countries suggest that a significant number of these children have not been told of their HIV status. The objective of this study was to assess diagnosis disclosure status of perinatally acquired HIV-infected Thai children. MATERIAL AND METHOD: Primary caregivers of 96 HIV-infected children aged 5 years and older were interviewed to assess the child disclosure status and the caregivers reasons to disclose or not to disclose the diagnosis to the child. The disclosed children were also interviewed to assess perception of their illness. RESULTS: Nineteen of 96 children (19.8%) had been told of their HIV diagnosis by their caregivers. The mean age of the disclosed children was 9.6 years. Eighty-four percent of the disclosed children reported perception of their illness as having HIV infection or AIDS. Common reasons for non-disclosing were concerns that the child was too young, that the child might be psychologically harmed, and that the child could not keep the secret. Of 77 non-disclosing caregivers, 54 reported that they plan to disclose HIV status to the children in the future. CONCLUSION: This study demonstrates that diagnosis disclosure was made in only 1/5 of HIV-infected children, and that most of the caregivers were reluctant in disclosing serostatus to the child. Development of an appropriate guideline for assisting the caregivers and the children to deal with the difficult disclosure process is needed.
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BACKGROUND: The identification of the BRCA1 gene is a powerful tool for predicting a patient's lifetime risk for carcinoma of the breast and ovary when she has hereditary breast/ovarian carcinoma (HBOC) syndrome. The process of BRCA1 testing and genetic counseling and participants' reactions to test results, are described. METHODS: Education about the natural history of HBOC syndrome and the pros and cons of genetic testing was provided to 14 HBOC families comprised of 2549 bloodline relatives. Of these, 388 underwent DNA testing. After informed consent was given by participants, formal linkage analysis and gene mutation studies were performed on the families. Qualitative data on intentions and emotional reactions were collected by physicians/counselors during the genetic counseling sessions. RESULTS: Of those tested, 181 received their results after further genetic counseling. Seventy-eight of them were positive and 100 were negative for BRCA1 gene mutation. Three had ambiguous findings. The most common reasons given for seeking DNA testing were concern about risk to children and concern about surveillance and prevention. Prophylactic mastectomy was considered by 35% of women who tested positive, whereas prophylactic oophorectomy was considered an important option by 76%. Twenty-five percent of both BRCA1 positive and negative individuals were concerned about discrimination by insurance companies. Eighty percent of those who tested negative reported emotional relief, whereas over one-third of those who tested positive reported sadness, anger, or guilt. CONCLUSIONS: DNA testing of patients with HBOC syndrome must be performed in the context of genetic counseling. The authors' results demonstrate the many complex clinical and nonclinical issues that are important in this process.