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PubMed1993

Legal and ethical issues in psychiatric genetic research.

Genetic research may uncover the causes of severe mental disorders, and many projects have been undertaken to locate the genes responsible for schizophrenia, bipolar disorder, and Alzheimer disease. A number of sensitive legal and ethical issues have been raised, including 1) protection of confidential data concerning research subjects; 2) the assessment of types and degree of risk to subjects who participate in such studies; 3) the legal and ethical acceptability of substituted judgement on behalf of patients who may not be competent to provide informed consent; and 4) the separation of research and clinical roles in areas such as genetic counseling. Federal regulations and other guidelines are of limited value in dealing with such concerns, and many important human subjects issues will need to be dealt with by the investigator, subject to approval by a local Institutional Review Board. There does seem to be general agreement that informed consent must be obtained, potential risks of research need to be minimized, and confidentiality of sensitive data must be protected.

Advance Directives↗
PubMed1998

Information in the ICU: are we being honest with our patients? The results of a European questionnaire.

BACKGROUND: We were interested in determining the current practices and views of European intensive care doctors regarding communication with patients and informed consent for interventions. METHODS: A questionnaire was sent to the 1272 western European doctor members of the European Society of Intensive Care Medicine. All questionnaires were anonymous. Five hundred four completed questionnaires from 16 western European countries were analyzed. RESULTS: Of the respondents, 25 % said they would always give complete information to a patient, although 35 % felt they should. Thirty-two percent would give complete details of an iatrogenic incident, but 70% felt they should. There were significant differences in these attitudes between doctors from different countries, with doctors from the Netherlands more likely to give complete information, and doctors from Greece, Spain and Italy less likely. Fifty percent of the respondents required written consent for surgery, but for insertion of an arterial catheter oral consent was more widely accepted. The Netherlands and Scandinavia generally accepted oral requests for procedures, while Germany and the United Kingdom preferred written requests. Doctors of all countries were generally happy with their current practice concerning informed consent. Seventy-five percent would accept the right of a patient to refuse treatment, but 19% would carry out the procedure against the patient's wishes. CONCLUSIONS: Doctors are often not completely honest with their patients regarding their diagnosis or prognosis, or in the event of an iatrogenic incident. However, most doctors will respect a patient's right to refuse treatment. Informed consent practices vary substantially and are largely determined by locally accepted policy and accepted by doctors working in those areas.

Adult↗
PubMed1997

Stigma, disclosure, and family functioning among parents of children conceived through donor insemination.

OBJECTIVE: To examine the influence of gender, male infertility factor, and other demographic variables on stigma and whether parents tell their children that they were conceived by donor insemination (DI) and to ascertain if stigma and the disclosure decision affect parental bonding with the child or the quality of the interparental relationship. DESIGN: One hundred eighty-four San Francisco Bay Area couples who had become parents by DI were asked to complete a self-administered questionnaire. SETTING: A private infertility practice. PATIENT(S): Eighty-two men and 94 women who completed the questionnaire. MAIN OUTCOME MEASURE: A questionnaire assessing disclosure, stigma, parental bonding, and the quality of the interparental relationship. RESULT(S): Factors that increased the couple's likelihood of disclosure included younger age, azoospermia, lower stigma scores, and having more than one DI child. Fathers who scored higher on stigma reported less parental warmth and parental fostering of independence. CONCLUSION(S): Because the decision regarding disclosure of DI treatment was not linked to parental bonding with the child or to the quality of the interparental relationship, we cannot conclude that nondisclosure is harmful to family relationships or is a symptom of family problems. The husband's perceptions of stigma however, may affect the father--child relationship adversely.

Adult↗
PubMed1999

Bioethics of the refusal of blood by Jehovah's Witnesses: Part 3. A proposal for a don't-ask-don't-tell policy.

Of growing concern over Jehovah's Witnesses' (JWs) refusal of blood is the intrusion of the religious organisation into its members' personal decision making about medical care. The organisation currently may apply severe religious sanctions to JWs who opt for certain forms of blood-based treatment. While the doctrine may be maintained as the unchangeable "law of God", the autonomy of individual JW patients could still be protected by the organisation modifying its current policy so that it strictly adheres to the right of privacy regarding personal medical information. The author proposes that the controlling religious organisation adopt a "don't-ask-don't-tell" policy, which assures JWs that they would neither be asked nor compelled to reveal personal medical information, either to one another or to the church organisation. This would relieve patients of the fear of breach of medical confidentiality and ensure a truly autonomous decision on blood-based treatments without fear of organisational control or sanction.

Blood Transfusion↗
PubMed2005

Need for enforcement of ethicolegal education - an analysis of the survey of postgraduate clinical trainees.

BACKGROUND: The number of medical lawsuits in Japan was between 14 and 21 each year before 1998, but increased to 24 to 35 per year after 1999. There were 210 lawsuits during this 10-year period. There is a need for skills and knowledge related to ethics, which is as fundamental to the practice of medicine as basic sciences or clinical skills. In Japan education in ethics is relatively rare and its importance is not yet recognized. Establishing ethics education using legal precedents, which has already been achieved in Western countries, will be a very important issue in Japan. In the present study, a questionnaire survey was conducted among graduate intern doctors, in order to investigate whether ethics education using precedents might have a positive effect in Japan. METHODS: In 2002, a questionnaire survey entitled Physicians' Clinical Ethics was carried out in a compulsory orientation lecture given to trainees before they started clinical practice in our hospital. The attendees at this lecture were trainees who came from colleges in various districts of Japan. During the lecture, 102 questionnaires were distributed, completed by attendees and collected. The recovery rate was 100%. The questionnaire consisted of 22 questions (in three categories), of which 20 were answered by multiple choices, and the other two were answered by description. The time required to complete the questionnaire was about 10 minutes. RESULTS: The recovered questionnaires were analyzed using statistical analysis software (SPSS for Windows, Release 10.07J-1/June/2000), in addition to simple statistical analysis. answers using multiple choices for the 20 questions in the questionnaire were input into SPSS. The principal component analysis was performed for each question. As a result, the item that came to the fore was "legal precedent". Since many intern doctors were interested in understanding laws and precedents, learning about ethical considerations through education using precedents might better meet with their needs and interests. CONCLUSION: We applied a new method in which the results of principal component analysis and frequencies of answers to other questions were combined. From this we deduced that the precedent education used in Western countries was useful to help doctors acquire ethical sensitivity and was not against their will. A relationship was found between reading precedents and the influence of lawsuits, and it was thought that student participation-type precedent education would be useful for doctors in order to acquire ethical sensitivity.

Curriculum↗
PubMed1989

Ethics in obstetric ultrasound.

The authors provide an overview of ethics, medical ethics, and obstetric ethics. An ethical framework is developed using the beneficence and autonomy models of moral responsibility in obstetric care. In terms of this framework, four ethical issues common to all ultrasound examinations are examined: (1) competence to perform obstetric ultrasound and referral to specialists, (2) routine ultrasound screening, (3) disclosure of results, and (4) confidentiality.

Beneficence↗
PubMedDate not supplied

Disclosure of human immunodeficiency virus status in healthcare settings: ethical concerns.

As knowledge of human immunodeficiency virus (HIV) disease increases, society's attitudes toward disclosure of seropositivity are reverting to a traditional public health approach. Both patients and healthcare professionals fear HIV infection (although the risks of transmission in healthcare are small), and broadly support disclosure. In this article, the disclosure issue is examined within a framework of the ethical principles of autonomy, nonmaleficence, beneficence, and justice, which suggests that patients and healthcare professionals should be required to disclose known seropositivity before exposure-prone procedures are performed. Because of the risk of stigmatization, renewed effort to prevent unwarranted disclosure by healthcare professionals also is required.

Attitude to Health↗
PubMed2005

Disclosing the diagnosis of multiple sclerosis.

CONTEXT: The question of how best to disclose to patients the diagnosis of serious and/or incurable neurological diseases has been much explored, but that of when has received little rigorous study. The present study investigates this question in relation to multiple sclerosis (MS), a disease marked by its incurability, unpredictability and predilection for young adults. OBJECTIVES: We aimed to ascertain the preferences of Greek MS sufferers concerning when they should ideally be informed they have the disease, and their preferences and reactions regarding disclosure of the diagnosis. Design, setting and patients 1,200 Greek MS patients,members of the MS Society, were asked to complete a questionnaire regarding their experience of and attitudes towards receiving the diagnosis. DESIGN, SETTING AND PATIENTS: 1,200 Greek MS patients,members of the MS Society, were asked to complete a questionnaire regarding their experience of and attitudes towards receiving the diagnosis. RESULTS: 657 patients (55 %) responded. 91% favoured learning the diagnosis immediately, but only 44% had had this experience: 29% had been informed within 1-3 years, and 27% later. Interestingly, however, a significant minority (9 %) suggested a possible preference for delayed delivery of diagnosis and 23.2% stated that concealing the diagnosis would not lead to loss of confidence in their doctor. CONCLUSION: This study-the largest of its kind-provides objective data supporting prompt disclosure of diagnosis as the clearly-expressed preference amongst most patients. Interestingly, however, the results also re-emphasise the importance of a difficult medical art: attempting to judge whether an individual patient is one (of the 91%) preferring immediate disclosure-or of the nearly 1-in-10 (9%) who may not.

Adolescent↗
PubMed1998

Expression of stressful experiences through writing: effects of a self-regulation manipulation for pessimists and optimists.

This study assessed the effectiveness of a writing task designed to foster self-regulatory coping with stressful experiences to reduce medical clinic visits and to promote adjustment. Students entering college (N = 122) who were classified as optimists or pessimists by using a dispositional optimism measure participated in a self-regulation task (expressing thoughts and feelings about entering college and then formulating coping plans), a disclosure task (expressing thoughts and feelings only), or a control task (writing about trivial topics) for 3 weekly writing sessions. Among optimists, both the self-regulation task and the disclosure task reduced illness-related clinic visits during the following month; among pessimists, only the self-regulation task reduced clinic visits. In general, the self-regulation task beneficially affected mood state and college adjustment whereas the disclosure task increased grade point averages.

Achievement↗
PubMed1999

Relationships between work and HIV/AIDS status.

The aim of this study was to assess reasons contributing to a cessation of occupational activities in HIV-infected persons. One hundred patients were studied, 55 of whom were working at the time of the study while 45 were unemployed. Twenty of the patients had been diagnosed as having AIDS and the remaining patients were HIV-positive. The main causes of work cessation were psychological, not physical, symptoms. Disclosure of HIV status to work colleagues or employers does not seem to have an effect on employment.

Adult↗
PubMedDate not supplied

Scientific journals and their authors' financial interests: a pilot study.

BACKGROUND: The credibility of modern science is grounded on the perception of the objectivity of its scientists, but that credibility can be undermined by financial conflicts of interest. The US Public Health Service and the National Science Foundation issued regulations effective October 1, 1995, regarding the disclosure of financial interests in the submission of grant proposals. Several scientific journals have also established pertinent policies for authors and editors. The objectives of this study were: (1) to select a set of published articles and observe the degree to which a sample of authors hold a financial interest in areas related to their research that are reportable under current standards, and (2) to examine the hypothesis that significant numbers of authors of articles in life science and biomedical journals have verifiable financial interests that might be important for journal editors and readers to know. This paper measures the frequency of selected financial interests held among lead authors of certain types of scientific publications and assesses disclosure practices of authors and journals. METHOD: These objectives were applied to a pilot study of Massachusetts academic scientists who were cited as first or last author in at least one article published in 1992 in 14 leading journals of cell or molecular biology and medicine. We created a database of every original article published in 1992 by 14 leading life science and biomedical journals, supplemented by data sets consisting of (1) Massachusetts biotechnology firms, including their officers and scientific advisory boards, and (2) scientists listed as inventors on patents or patent applications registered with the World Intellectual Property Organization. RESULTS: We examined 1,105 university authors (first and last cited) from Massachusetts institutions whose 789 articles, published in 1992, appeared in 14 scientific and medical journals. Authors are said to 'possess a financial interest' if they are listed as inventors in a patent or patent application closely related to their published work; serve on a scientific advisory board of a biotechnology company; or are officers, directors, or major shareholders (beneficial owner of 10% or more of stock issued) in a firm that has commercial interests related to their research. Applying the criteria to the reference population of journals and Massachusetts academic authors, we measured the following frequencies for lead authors: 0.20 for serving on a scientific advisory board; 0.07 for being an officer, director, or major shareholder in a biotechnology firm, and 0.22 for being listed as an inventor in a related patent or patent application. The joint frequency of articles in the journals reviewed with a lead author that meets one of the three conditions is 0.34. CONCLUSIONS: One of every three articles in our sample has at least one Massachusetts-based author with a financial interest, and 15% of the authors in our sample have a financial interest relevant to one of their publications. For the year 1992, the rate of published voluntary disclosures of financial interest (as defined in our study) is virtually zero, but relatively few scientific and biomedical journals at that time required any such disclosure to journal editors and reviewers. Further research is needed to determine the effectiveness of mandatory disclosure requirements by some journals.

Authorship↗
PubMed1992

Disclosure of tardive dyskinesia: effect of written policy on risk disclosure.

Over half of the states in the country have written statutory and/or regulatory policies that require psychiatrists treating inpatients within the state mental health system to disclose risks associated with treatment to voluntarily admitted patients. A severe side effect associated with the long-term use of neuroleptic medication is tardive dyskinesia (TD). A nationwide study was conducted to investigate the effect of written risk disclosure policy on psychiatrists' self-reported disclosure of the risks associated with neuroleptics to individuals diagnosed as having schizophrenia of a chronic nature. Participating in the study were 520 psychiatrists from 94 state/county mental hospitals located in 35 states. Fifty-four percent of those psychiatrists reported that they typically disclosed TD to the target patient population. The study results did not support the hypothesis that the presence of statutory and regulatory policy on disclosure of risk results in psychiatrists typically disclosing TD to patients.

Antipsychotic Agents↗