ABSTRACT
The American Medical Informatics Association 2001 Spring Congress brought together the public health and informatics communities to develop a national agenda for public health informatics. Discussions on funding and governance; architecture and infrastructure; standards and vocabulary; research, evaluation, and best practices; privacy, confidentiality, and security; and training and workforce resulted in 74 recommendations with two key themes: (1) all stakeholders need to be engaged in coordinated activities related to public health information architecture, standards, confidentiality, best practices, and research and (2) informatics training is needed throughout the public health workforce. Implementation of this consensus agenda will help promote progress in the application of information technology to improve public health.
Subject(s)
Medical Informatics/organization & administration , Public Health Administration , Congresses as Topic , Humans , Medical Informatics/education , Planning Techniques , Program Development , Societies, Medical , United StatesSubject(s)
Internet , Research , Clinical Trials as Topic , Confidentiality , Databases as Topic , Humans , National Library of Medicine (U.S.) , United StatesSubject(s)
Emigration and Immigration/legislation & jurisprudence , Ethics Committees , Patient Advocacy/legislation & jurisprudence , Rheumatic Heart Disease/surgery , Utilization Review , Adult , Hospitals, Public/legislation & jurisprudence , Hospitals, Teaching/legislation & jurisprudence , Humans , Male , Organizational Policy , Rheumatic Heart Disease/complicationsABSTRACT
News media accounts of issues in bioethics gain significance to the extent that the media influence public policy and inform personal decision making. The increasingly frequent appearance of bioethics in the news thus imposes responsibilities on journalists and their sources. These responsibilities are identified and discussed, as is (i) the concept of "news-worthiness" as applied to bioethics, (ii) the variable quality of bioethics reportage and (iii) journalists' reliance on ethicists to pass judgment. Because of the potential social and other benefits of high quality reporting on ethical issues, it is argued that journalists and their bioethics sources should explore and accommodate more productive relationships. An optimal journalism-ethics relationship will be one characterized by "para-ethics," in which journalistic constraints are noted but also in which issues and arguments are presented without oversimplification and credible disagreement is given appropriate attention.
Subject(s)
Bioethical Issues , Bioethics , Ethicists , Journalism , Mass Media , Professional Role , Public Policy , Humans , Information Dissemination , Moral Obligations , Philosophy , Social ValuesABSTRACT
Tools and strategies for eliciting patient preferences for end-of-life care are often absent, of poor quality, or ignored. The American Medical Association's Council on Ethical and Judicial Affairs has proposed new guidelines for the "optimal use" of advance directives. The guidelines urge the use of detailed work sheets in "tailoring end-of-life care to patients' preferences" and suggest a process to be followed by physicians in educating patients about death and dying. However, these well-intentioned guidelines face 3 key obstacles: the negative consequences of "ritualizing" end-of-life planning, physicians' inclination to disdain and to delegate to others communication about end-of-life preferences, and the tardiness of medical pedagogy in emphasizing end-of-life care and communication as crucial for the success of future physicians.
Subject(s)
Advance Care Planning , Advance Directives , Communication , Physician-Patient Relations , American Medical Association , Guidelines as Topic , Hospitals , Humans , Physician's Role , United StatesSubject(s)
Computer Communication Networks , Confidentiality , Information Systems , Medical Records , Computer Communication Networks/legislation & jurisprudence , Computer Communication Networks/standards , Computer Security , Confidentiality/legislation & jurisprudence , Ethics, Medical , Freedom , Humans , Information Systems/legislation & jurisprudence , Information Systems/standards , Medical Records/legislation & jurisprudence , Morals , National Practitioner Data Bank , Physician-Patient Relations , Policy Making , Privacy , Social ResponsibilityABSTRACT
Certain leaders of the Deaf community are attempting to generate opposition to cochlear implants in children by pitting the rights of deaf children and their families against the needs of deaf society. They have labeled physicians as unethical and CIs as "child abuse," resulting in misunderstanding, anger, and violence. However, the arguments of these leaders are internally contradictory: they hold that deafness is not a disability but support disability benefits for the deaf; they maintain both that cochlear implants do not work and that they work so well that they are "genocidal" (i.e., they will eliminate deafness). Their positions oppose the ethical principles of beneficence and autonomy as they relate to self-determination and privacy. Ethical standards hold that the best interests of the child precede those of a special interest group and that parents have the responsibility to determine their children's best interests.
Subject(s)
Child Advocacy , Cochlear Implants , Ethics, Medical , Child , Decision Making , Disabled Persons/legislation & jurisprudence , Humans , Legislation, Medical , United StatesABSTRACT
The union of genomics and computational information retrieval raises a number of ethical issues, including data sharing, database accuracy, group and subgroup stigma, and privacy and confidentiality. These issues are introduced and assigned a preliminary analysis which, it is hoped, may be of use in more sustained efforts to identify issues, solutions and potential guidelines, to stimulate education, and to strike the most appropriate balance between the rights of individuals and the needs of researchers and society.
Subject(s)
Databases, Nucleic Acid , Ethics, Medical , Gene Library , Genetic Privacy , Genetic Research , Human Genome Project , Information Dissemination , Information Storage and Retrieval , Computer Security , Confidentiality , Humans , Prejudice , Reproducibility of Results , Research SubjectsABSTRACT
This article reviews the current limitations of computerized outcome predictor models and severity scoring systems. A logical extension of predictor models, a "computational futility metric," is proposed with a discussion of potential uses and abuses. These types of electronic surveillance will not solve the problem of society's denial of death or resolve the allocation of medical resources. Issues related to the protection of patients and physicians under electronic epidemiologic surveillance are discussed.
