Fabry disease in genetic counseling practice: recommendations of the National Society of Genetic Counselors

The objective of this document is to provide health care professionals with recommendations for genetic counseling and testing of individuals with a suspected or confirmed diagnosis of Fabry disease, with a family history of Fabry disease, and those identified as female carriers of Fabry disease. These recommendations are the opinions of a multicenter working group of genetic counselors, medical geneticists, and other health professionals with expertise in Fabry disease counseling, as well as an individual with Fabry disease who is a founder of a Fabry disease patient advocacy group in the United States. The recommendations are U.S. Preventive Task Force Class III, and they are based on clinical experience, a review of pertinent English-language articles, and reports of expert committees. This document reviews the genetics of Fabry disease, the indications for genetic testing and interpretation of results, psychosocial considerations, and references for professional and patient resources. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a healthcare provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.     

Conflicts of interest in science in Armenia

The author describes problems facing Armenia in reorganization of the structure of science in the post-socialist era with the aim of utilizing limited state resources more efficiently by reducing the number of separate scientific institutes, concentrating on essential core subjects required by the nation and encouraging all other projects to compete in the international arena for grant sponsorship. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Conflict of interest: the importance of potential

The UK Medical Research Council (MRC) takes the issue of conflict of interest very seriously. The overall aim is to preserve a climate in which personal and organisational innovation can flourish while ensuring that potential conflicts are disclosed and identified and conflicts are either avoided or managed with integrity. The approach needs to encompass the MRC’s various responsibilities and the levels at which conflicts might arise: MRC staff (scientists and administrators); the governing Council; research Boards and committees; external peer-reviewers; and applicants for funding. To achieve its goals, the MRC has issued practical guidance on various aspects of conflict of interest. For the future, the MRC has identified the continuing commercialisation of science and the increasing involvement of lay people in scientific decision-making as special challenges in this area. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Individual and institutional conflict of interest: policy review by research universities in the United States

This paper is a discussion of efforts to manage real and potential conflicts of interest in university research in the United States. The focus is on the report by an Association of American Universities (AAU) task force that addresses both individual and institutional conflict of interest issues. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Beyond conflict of interest: the responsible conduct of research

This paper reports data and scholarly opinion that support the perception of systemic flaws in the management of scientific professions and the research enterprise; explores the responsibility that professional status places on the scientific professions, and elaborates the concept of the responsible conduct of research (RCR). Data are presented on research misconduct, availability of research guidelines, and perceived research quality. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland, 5–6 April, 2002. The opinions expressed herein are those of the author and do not necessarily represent the views of the Office of Research Integrity, the U.S. Department of Health and Human Services, or any other federal agency.     

Conflict of interest in medicine in Lithuania: legal and ethical aspects

The current legal framework within the Lithuanian health system is described including a review of the physician’s autonomy, rights and duties, and patients’ rights including the right to reimbursement. The role of ethical codes and the law are discussed. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland on 5–6 April, 2002.     

Causal Responsibility and Rationing in Medicine

The article addresses the issue of rationing health care services, a topic currently being hotly debated in many countries. The author argues that the aspect of causal responsibility ought to play a decisive role in the allocation of limited medical resources. Starting out from Ronald Dworkin's distinction between option luck and brute luck, the appropriate and meaningful uses of the term causal responsibility are clarified first. A discussion of the conditions which might justify giving lower priority to patients whose illnesses are the result of unhealthy behavior, like e.g. alcohol abuse, follows. Causal responsibility is then viewed in the context of private health insurance and the club model of organ donation. It is argued that individuals themselves are basically responsible for their decisions regarding insurance coverage and membership in organ donors' clubs. Causal responsibility is shown to be a more suitable criterion for rationing scarce medical resources than other criteria which might alternatively be considered, such as patients' age.     

The relevance of Rawls' principle of justice for research on cognitively impaired patients

An ethical conflict arises when we must performresearch in the interest of future patients,but that this may occasionally injure theinterests of today's patients.In the case of cognitively impaired persons, thequestion arises whether it is compatible withhumane healthcare not only to treat, but alsoto use these patients for research purposes.Some bioethicists and theologians haveformulated a general duty of solidarity, alsopertaining to cognitively impaired persons, as ajustification for research on these persons. Ifone examines this thesis from the theory ofjustice according to John Rawls, it is revealedthat such a duty of solidarity cannotnecessarily be extrapolated from Rawls'conception of justice. This is at least true ofRawls' difference principle, because accordingto the difference principle only those measuresare justifiable which serve the interest of therespective least well off. Those measures whichwould engender additional injury for the leastwell off could not be balanced by any utilityaccording to Rawls.However, John Rawls' difference principleis subordinate to the first principle,which is that each person has an equalright to the most extensive basic libertycompatible with the same liberty for others.These primary goods are determined by thefreedom and integrity of the person.This integrity of decisionally impaired personswould be in danger if one would abstain fromresearch and thus forego the increase inknowledge related to their disease. Thus onecould conclude, at least from Rawls' firstprinciple, that society must take on a duty toguarantee the degrees of freedom forcognitively impaired persons and thus alsosupport the efforts for their healing.