Objectives: To develop and pilot a questionnaire based assessment of the importance patients place on medical confidentiality, whether they support disclosure of confidential information to protect third parties, and whether they consider that this would impair full disclosure in medical consultations.Design: Questionnaire administered to 30 consecutive patients attending a GP surgery.Results: Overall patients valued confidentiality, felt that other patients might be deterred from seeking treatment if it were not guaranteed, but did not think that they would withhold information for this (...) reason themselves.Conclusions: When presented with brief details of five clinical situations in which a breach of confidentiality might be considered, a clear majority of subjects believed that doctors should disclose information in two of the situations, but subjects were not confident that doctors would do so. In three situations, about half felt that disclosure was justified—these included the only scenario in which disclosure was clearly mandated by statute. There was little change in patients’ general attitude to confidentiality after considering the scenarios. However, the views expressed were often inconsistent with responses to the clinical scenarios, suggesting that complex opinions were not accurately reflected in the responses. The format of the questionnaire has been amended, and the study will be repeated with other groups of patients. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Technological approaches are increasingly discussed as a solution for the provision of support in activities of daily living as well as in medical and nursing care for older people. The development and implementation of such assistive technologies for eldercare raise manifold ethical, legal, and social questions. The discussion of these questions is influenced by theoretical perspectives and approaches from medical and nursing ethics, especially the principlist framework of autonomy, non-maleficence, beneficence, and justice. Tying in with previous criticism, the present contribution (...) is taking these principles as a starting point and as a frame of reference to be critically re-examined. It thus aims to outline how existing ethical frameworks need to be extended or reconsidered to capture the ethical issues posed by technological developments regarding care for older people. In a first step, we provide a brief overview of assistive technologies in eldercare according to their purposes and functions. In the next step, we discuss how the questions and problems raised by new technologies in eldercare call for an expansion, re-interpretation, and revision of the principlist framework. We underline that the inclusion of ethical perspectives from engineering and computer science as well as a closer consideration of socio-political dimensions and fundamental anthropological and praxeological questions are needed. (shrink)

The aim of this paper is to examine the theoretical foundations of the professional secret and confidentiality in Social Work and Social Education in order to propose an alternative approach to the issue which does not reduce the professional secret to a utilitarian device designed to increase the success of social services. Our approach rests upon the idea that the professional secret not only protects the individual that has confided a secret, but also society as a whole, since intimacy and (...) privacy are a necessary presupposition of all other human rights. Understood this way, the professional secret should be regarded as a cornerstone of democracy. The article therefore concludes by warning policy-makers and social workers and educators of the paradox inhabited by the professional secret: breaching confidentiality may be simultaneously an inevitable measure to safeguard society and a way to render society as a whole more vulnerable. (shrink)

This report explores the relationship between philosophy and medicine in the U.K. We note that medical training involves very little formal instruction in philosophy and ethics, and that, with few exceptions, philosophers in the U.K. do not contribute to the instruction of physicians or the philosophy of medicine. However, reviewing the problems arising out of recent developments within scientific medicine we find a pressing need for future philosophical analysis in the following areas: psychiatry, organ transplantation, abortion, euthanasia, experiments on living (...) subjects, consent, confidentiality, the relationship between medicine and political authority, and the provisions for social justice in medicine. (shrink)

Ethics support staff help others to deal with moral challenges. However, they themselves can also experience moral challenges such as issues regarding (breaching) confidentiality when practicing ethics support. Currently there is no insight in these confidentiality issues and also no professional guidance for dealing with them. To gain insight into moral challenges related to Moral Case Deliberation (MCD), we studied a) beliefs and experiences of MCD facilitators regarding breaching confidentiality, b) considerations for (not) breaching confidentiality, and c) needs for an (...) ethics support tool. Data collection consisted of qualitative research methods: six semi-structured interviews; analyses of a) two recorded MCD sessions, and b) a focus group with MCD facilitators. Findings: MCD facilitators mention different conceptions and interpretations of confidentiality and various moral challenges. Questions concerning confidentiality ultimately cause reflections on roles and responsibilities of facilitators. Needs for ethics support vary from seeking advice to procedural and sometimes normative guidance for MCD facilitators. Education for MCD facilitators should focus on developing a concrete tool that stimulates awareness and reflection(skills). (shrink)

Objectives—This study examined the issue of confidentiality in relation to i) undergraduate curriculum content in physiotherapy, and ii) the awareness, experiences and attitudes of clinical physiotherapists.Design—Postal survey of universities and focus group interviews with physiotherapists.Setting—Twenty-five universities in the UK and Ireland and 44 therapists in five hospitals in southern England.Results—The survey of universities indicated that legal and ethical aspects of confidentiality featured in virtually all preregistration courses that responded. However, whereas its inclusion was rated as extremely important, the degree of (...) coverage of confidentiality varied considerably between courses. Within the focus groups, 35 informants recollected coverage of confidentiality in their preregistration education, and 12 in postregistration in-service training; in neither case was this coverage in great detail. Informants identified environmental factors and working practices as barriers to preserving confidentiality. Disclosure to others also gave rise to difficulties. Informants were only aware in general terms of the relevant sections of the Chartered Society of Physiotherapy's Rules of Professional Conduct.Conclusions—Aspects of hospital-based physiotherapy practice were seen to create specific problems in relation to confidentiality. More detailed sources of education and guidance on this issue appear to be required. (shrink)

In Nazi Germany, approximately 200 000 mentally ill people were murdered under the guise of euthanasia. Relatively little is known regarding the fate of the Jewish mentally ill patients targeted in this process, long before the Holocaust officially began. For the Nazis, Jewish mentally ill patients were doubly cursed since they embodied both “precarious genes” and “racial toxin”. To preserve the memory of the victims, Yad Vashem, the leading institution dedicated to documentation of the Holocaust, actively collects information and documents (...) the fate of victims in an open online database. Recently, a list of approximately 1200 names of Jewish mentally ill euthanasia victims has been compiled from hospital archives. Their fate remains unknown to surviving family members. Given the duty to preserve medical confidentiality, can this list be publicised for public interest and for notifying families—publicising names and death circumstances, including where “killed” would immediately indicate that the person had had a mental illness? Does the right to medical confidentiality lapse upon death? Is time elapsed since death a factor? Can opposing obligations of preserving victims’ memory over-ride medical confidentiality? What if a family member objects to a grandparent’s name being exposed on the list of mentally ill patients? This article considers these issues as well as the “rational” and “non-rational” factors in ethical decisional making surrounding this unique dilemma. Several possible solutions are proposed including preserving the list in a locked database for access by families and researchers, publicising in the media that such a list exists, publishing the information online without any identifiers and submitting the information to historians, allowing them to process the data as they see fit. (shrink)