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PubMed2005

Ethics, evidence, and public policy.

The growth of evidence-based medicine (EBM) raises a number of ethical issues that have too often been overlooked. These include issues that arise when clinicians make judgments under uncertainty, new challenges for the clinician-patient relationship, new duties for institutional review boards, issues in physician autonomy and reimbursement, and challenges for disclosure and informed consent. Ethics and EBM must be addressed by policy makers and integrated into medical education.

Ethics, Clinical↗
PubMed1995

The consequences of disclosure: one hospital's response to the presence of an HIV-positive physician.

Health care administrators are having to confront the many and complex problems associated with patient fears about the transmissibility of the HIV virus. Particularly acute are concerns that are raised when the physicians are HIV-positive or have AIDS. This article presents a case history of how one hospital handled the problems created by the announcement by one of its emergency room physicians that he was HIV-positive. The hospital's response--which included disclosure to the community, the full cooperation of the physician, provision of free counseling, and HIV testing--and the aftermath of this AIDS-related event are described. This case is discussed in relationship to the ongoing debate about the ethics and consequences of disclosure of the HIV status of health care workers.

Centers for Disease Control and Prevention, U.S.↗
PubMed1994

Certain legal aspects of derivatives.

This article discusses legal characteristics of derivatives that a not-for-profit health care company may use in a conduit financing in which a governmental issuer issues bonds for the benefit of a health care company. This article also presents the Master Agreement promulgated by the International Swaps and Derivatives Association; discusses how to get out of a derivative; discusses the status of a derivative after insolvency of a counterparty; presents disclosure issues relating to documents prepared in connection with an issue of bonds; and describes the treatment of derivatives under commodities regulations. It concludes with a presentation of possible new regulations applying to derivatives.

Bankruptcy↗
PubMed2004

Association of funding and findings of pharmaceutical research at a meeting of a medical professional society.

PURPOSE: To evaluate the association between funding and findings of pharmaceutical research presented at an annual meeting of a medical professional society. METHODS: We reviewed the abstracts of all papers and posters presented at the annual meeting of a medical professional society. Two independent raters classified each study of a drug (n = 48) as either positive (favoring the drug studied) or negative, and as either funded by a pharmaceutical company or not. We computed kappa and chi-squared statistics to evaluate the agreement between the raters, as well as the association between the results and the sponsorship of the study. RESULTS: Thirty studies of drugs (63%) were supported by pharmaceutical companies, all of which reported positive results. Of the 18 studies (37%) not supported by pharmaceutical companies, 67% reported positive results. The association between pharmaceutical funding and positive findings was statistically significant (P = 0.0007). CONCLUSION: At this scientific meeting, research funding from pharmaceutical companies was associated with study findings that supported the use of drugs marketed by pharmaceutical sponsors. We emphasize further study of this relation and suggest three principles--full disclosure, policies against "outcome bias," and educational opportunities--that may help manage industry-academia conflicts of interest that could otherwise jeopardize the credibility of pharmaceutical research presented at scientific meetings.

Drug Industry↗
PubMed2001

Parental communication of BRCA1/2 genetic test results to children.

The aim of this study was to evaluate the likelihood, correlates, and psychological impact of parental communication to children of parents' BRCA1/2 genetic test results for breast cancer risk. Subjects were 133 adult members of high risk families. Sociodemographic, clinical, and psychological distress variables were assessed during a baseline telephone interview conducted prior to patient education and test result notification. Parental communication of test results to children and parental psychological distress and coping efforts were assessed 1 month post-genetic counseling and receipt of test results. Mothers (versus fathers), and persons with higher levels of baseline general distress, were significantly more likely to communicate their test results to children. Post-counseling coping efforts, both active and avoidant, were positively associated with post-counseling distress levels. However, communication of test results to children did not relate to changes in distress. In conclusion, parents with higher levels of pre-counseling general psychological distress may be more likely to communicate their genetic test results to children; however, this act does not minimize their distress and could possibly generate distress in their youngsters. Research is needed to evaluate the process and content of post-test disclosure episodes and the impact on participant, child, and family functioning.

Adaptation, Psychological↗
PubMed2001

Disclosing a diagnosis of Alzheimer's disease: patient and family experiences.

BACKGROUND: Informing patients and families about the diagnosis of Alzheimer's disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members. METHODS: This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDA criteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes. RESULTS: A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other "organic" problem. INTERPRETATION: This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

Aged↗
PubMed2003

Experiences of men with breast cancer: an exploratory focus group study.

Management and care of men with breast cancer is based on that developed for women. Our study reports that men have specific issues regarding certain aspects of their breast cancer experience, including diagnosis, disclosure, support and gender-specific information, and offers suggestions for improved patient care.

Adult↗
PubMed2001

Disclosure of minor mental health problems: an exploratory theoretical study.

AIM: The aim of this study was to explore people's experiences, concerns and beliefs about disclosing minor mental health problems by focusing on the ways in which such disclosures are interpreted. BACKGROUND: Approximately half of people with mental health problems do not seek help. The decision to consult represents just one aspect of the process of revealing one's illness to others. People with mental health problems are known to be reluctant to reveal the existence of those problems through fear of how others might then view them. DESIGN: A qualitative approach was employed. In-depth interviews were carried out with 47 users and nonusers of community mental health services. Interviews were tape-recorded, transcribed and analysed. RESULTS: The data suggest that when people reveal minor mental health problems others interpret these in relation to a number of perceived contextual factors. These include perceptions of the severity and duration of any possible causes, the inner 'strength' of the person, the expected ability of the person to either solve or suppress the experience, and the form and context of the expression itself. The data presented included individuals who were seeking help for relatively 'minor' mental health problems (primarily depression and anxiety) and individuals who had no current mental health problems but routinely managed expressions of their own emotions. Throughout the data there appeared to be no distinct difference between these two groups other than one of the severity of psychological experience. CONCLUSION: The key elements involved in the interpretation of people's expressions of sadness were essentially the same as those involved in the interpretation of expressions of depression. An appreciation of these contextual factors influencing the interpretation and disclosure of minor mental health problems may aid the development of more person-centred mental health services and inform the content of health education in the mental health field.

Adaptation, Psychological↗
PubMed2006

Informed consent.

Disclosure of information prior to consent is a very complex area of medical ethics. On the surface it would seem to be quite clear cut, but on closer inspection the scope for 'grey areas' is vast. In practice, however, it could be argued that the number of cases that result in complaint or litigation is comparatively small. However, this does not mean that wrong decisions or unethical scenarios do not occur. It would seem that in clinical practice these ethical grey areas concerning patients' full knowledge of their condition or treatment are quite common. One of the barometers for how much disclosure should be given prior to consent could be the feedback obtained from the patients. Are they asking relevant questions pertinent to their condition and do they show a good understanding of the options available? This should be seen as a positive trait and should be welcomed by the healthcare professionals. Ultimately it gives patients greater autonomy and the healthcare professional can expand and build on the patient's knowledge as well as allay fears perhaps based on wrongly held information. Greater communication with the patient would help the healthcare professional pitch their explanations at the right level. Every case and scenario is different and unique and deserves to be treated as such. Studies have shown that most patients can understand their medical condition and treatment provided communication has been thorough (Gillon 1996). It is in the patients' best interests to feel comfortable with the level of disclosure offered to them. It can only foster greater trust and respect between them and the healthcare profession which has to be mutually beneficial to both parties.

Confidentiality↗
PubMed2001

Incest and women of color: a study of experiences and disclosure.

Clinical literature on incest trauma assumes a homogeneity of experience of all incest survivors including women of color. Experiences relating to community, culture, and family need to be acknowledged as salient aspects of the experiences of women of color who are also incest survivors. Twelve participants were interviewed regarding their experiences related to disclosure and coping. Participants described value systems, community mindedness, social attitudes, negative consequences amongst other social and cultural issues as factors affecting incest disclosure. Participants described cognitive reframing, determination and separation from the perpetrator as ways of coping with incest.

Adult↗
PubMed2003

Verbal and non-verbal disclosure of recalled negative experiences: relation to well-being.

This study investigated the relationship between methods of disclosure of recalled negative experience and well-being. Six first-year undergraduate class groups (N = 100) at an Australian university completed pre- and post-intervention measures of psychological and psychophysical well-being. For the disclosure intervention, three groups wrote, drew, or drew-and-wrote about a recalled negative experience (RNE groups); the three non-disclosure groups wrote, drew, or drew-and-wrote on neutral topics (NT groups). The expectation that disclosure of negative experiences would enhance well-being was partly supported, with writing and drawing-and-writing disclosure groups reporting increased psychological, but not psychophysical, well-being. As predicted, verbal disclosure methods were more effective than non-verbal methods, with the draw-and-write group showing the greatest improvement. Unexpectedly, disclosure via drawing alone was associated with decreased psychological well-being. Against predictions, changes were found in two NT groups: The draw-and-write group reported improved psychological, and the draw group improved psychophysical well-being. It was concluded that verbal disclosure, especially when combined with the non-verbal method of drawing, may enhance psychological well-being, but that drawing, without accompanying verbalization, may decrease psychological well-being. It is suggested that future studies address variables such as level of disclosure, content and time of the negative experience, with time taken to manifest changes in well-being, using both subjective and objective indicators.

Adolescent↗
PubMedDate not supplied

Politics and poker--two game plans shape up in AIDS-control strategy.

A line from the song 'Politics and Poker,' from the Broadway musical Fiorello, goes: 'Neither game's for children, either game is rough. Decisions, decisions, like who to pick, how to bet, how to play, how to call a bluff.' Events in recent months, leading up to and following the release of CCD's recommendations for preventing transmission of HIV to patients by health care workers, can be characterized as a nation playing both games in trying to deal with undefinable or unexplainable risks of AIDS transmission. The nation seems split between those who favor politically astute (though not necessarily logically or ethically sound) solutions, and those who believe that HIV-infected practitioners must make decisions on testing, disclosure, and changes in practice based on a rational assessment of each individual case--factoring in the odds of viral transmission, the chance of losing a career, the interpretation of risk, adherence to stringent infection control technique, timing, patient confidence, and peer support. Ether one is a gamble. This special issue of Hospital Ethics takes a look at the politics and poker of AIDS testing and disclosure, with special attention to the kinds of advice being offered to hospitals as they develop policies on infected health care workers.

AIDS Serodiagnosis↗
PubMed2006

Rape acknowledgment and postassault experiences: how acknowledgment status relates to disclosure, coping, worldview, and reactions received from others.

Many rape victims are unacknowledged. These victims do not label their experience as rape; instead they give the experience a more benign label, such as a miscommunication. The current study examined the relationship between victims' acknowledgment status and post-assault behaviors, moving beyond prior research. Analyses of covariance were conducted comparing the post-assault experiences of unacknowledged and acknowledged college rape victims (n = 256), controlling for differences in victims' assault characteristics, multiple victimization, and post-traumatic stress symptoms. Results supported that unacknowledged and acknowledged victims differed in their coping, disclosure, belief in justice, and receipt of egocentric reactions following disclosure. Implications for future work examining the dynamic interplay among assault characteristics, sexual scripts, acknowledgment status, and post-assault factors are discussed.

Adaptation, Psychological↗
PubMed1979

Legal and social issues in medical genetics.

This paper was written for the purpose of providing the physician with a perspective of the conflicting scientific, individual, and societal interests which have been evoked by increasing medical and scientific innovation in the area of human genetic disease. In it the following subjects are considered: (1) obtaining genetic information by amniocentesis, by genetic counseling, and by screening; (2) disclosure of genetic data to the patient; (3) inclusion of genetic data on the medical record; (4) courses of action available to the individual after disclosure of genetic information, i.e., abortion, sterilization, etc.; (5) the state and involuntary sterilization; and (6) prohibitions on marriage.

Abortion, Legal↗
PubMed1993

Questions of scientific responsibility: the Baltimore case.

A number of cases of questionable behavior in science have been extensively reported in the media during the last two or three years. What standards are upheld by the scientific community affect the community internally, and also affect its relations with society at large, including Congress. Here I wish to address questions of scientific responsibility, using the Baltimore case as a concrete instance where they came up. The first part containing historical background is necessary to provide readers with documentation so that they can have some factual bases on which to evaluate respective positions and my conclusions that follow -- based on further but more succinctly summarized documentation. I have reproduced many quotes because I firmly believe people are entitled to be represented by their own wording. Conversely, I hold people accountable for their official positions. Some of these are reproduced in footnotes, and some longer ones are reproduced in appendices. I also do not ask to be trusted. By providing numerous references, I hope that readers who find my documentation insufficient can follow up by looking up these references.... The article is in six parts: Part I. Historical Background. This part gives mostly a historical background of the early phases of the Baltimore case. Part II. The First Issue of Responsibility. This part presents a discussion of certain scientific responsibilities based on that background, specifically: the responsibility of answering questions about one's work, and the responsibility whether to submit to authority. Part III. The NIH Investigations. This part summarizes the two NIH investigations. Part IV. The Dingell Subcommittee. This part deals with the responsibilities of a Congressional Committee vis-à-vis science. Part V. Further Issues of Responsibility. This part goes into an open ended discussion of many issues of responsibility facing scientists, vis-à-vis themselves and vis-à-vis society at large, including Congress. The list is long, and readers can look at the section and paragraph headings to get an idea of their content. Part VI. Personal Credibility, a Shift at the Grass Roots, and Baltimore's Persistence.

Biomedical Research↗