Nora L. Jones

Patient Perspectives of Medical Confidentiality: A Review of the Literature

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality.DESIGN: Studies were found by searching MEDLINE, BIOETHICSLINE, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients’ confidentiality views and conduct were included.MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information.CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.

Patient perspectives on medical confidentiality

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality.DESIGN: Studies were found by searching MEDLINE, BIOETHICSLINE, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients’ confidentiality views and conduct were included.MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information.CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.

How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.

Objective: To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women’s decision to have clinical BRCA1/2 testing. Methods: Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing. Results: Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice. Conclusion: The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.

Semi-Structured Interviews in Bioethics Research

In this chapter, we present semi-structured interviewing as an adaptable method useful in bioethics research to gather data for issues of concern to researchers in the field. We discuss the theory and practice behind developing the interview guide, the logistics of managing a semi-structured interview-based research project, developing and applying a codebook, and data analysis. Throughout the chapter we use examples from empirical bioethics literature.

A visual anthropological approach to the "edutainment" of BODY WORLDS.

advances such as pacemakers and artificial hips and knees (Moore and Brown 2004a). The question that remains is whether the educational value of the exhibit is sufficient to meet the requirements of the UAGA or whether its entertainment aspect demeans human dignity and undermines its educational value. BODY WORLDS displays the human body in a manner that fully comports with societal requirements as incorporated in the UAGA because it respects human identity and personhood. The interior self is revealed in an aesthetic presentation that exposes the individual features of real human cadavers (Moore and Brown 2004a). These exhibits also allow the donors to contribute to human knowledge by providing the public with access to the intricate details of human anatomy. Unlike the unacceptable uses of the human body set forth previously, this exhibit pays tribute to the beauty and uniqueness of our human selves. Burns believes that BODY WORLDS compromises human dignity because the plastinates lose their own identities and become creations of von Hagens. Gunther von Hagens poses the bodies, sometimes to enhance their educational value and sometimes for artistic reasons (Moore and Brown 2004b). He also signs his name to his works (Burns 2007, 9). These acts do not destroy human dignity. On the contrary, the donors maintain their dignity by exercising their choice to become plastinates, a choice that some may find preferable to decay or cremation (Moore and Brown 2004b, 18). The choice to plastinate promotes the “critical interests” of the donor because choice allows the donor to determine the method of body disposition and how he or she will be remembered (Lewis 2002). Plastination also enables donors to continue the human mission of educating others, even after death (Moore and Brown 2004a). The fact that the donors were once living humans attracts and educates the public in a way that only real human cadavers could achieve (Moore and Brown 2004a). Individuals should be allowed to freely choose plastination. Their plastinated bodies serve as a legacy that will memorialize them and reinforce the humanness that each possesses—a tribute to their uniquely human identity.

Expectations for Function and Independence by Childhood Brain Tumors Survivors and Their Mothers

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment–related sequelae. Little is known, however, about the role of expectation for survivors’ function. From a mixed–methods study including qualitative interviews and quantitative measures from 40 caregiver–survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent expectations about a less optimistic future, (C) non–convergent expectations about a less optimistic future, and (D) non–convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re–)negotiating, and reaching their expectations of function and independence.

Representations of the Body in Pain: Anthropological Approaches

This chapter addresses the symbolic problem of pain. The symbolic problem of pain refers to the distinct and too infrequently nonoverlapping visual symbolic worlds of pain that practitioners and patients inhabit. Both systems find an allure in the visual for understanding pain. However, while the epistemology of medicine limits the validity and applicability of pain images to those produced by diagnostic imaging tools, for patients, their own personal production of images is treated as equally valid and applicable evidence of pain, perhaps even more so when the diagnostic mechanisms fail to uncover and show the sources of pain. After a review of the use of the visual in pain diagnosis and management, I argue for an ethics of looking that places individuals in both systems, as well as the lay public, in conversation. An ethics of looking is based on the idea that looking at an image is never an isolated act, devoid of historical, institutional, and ideological pressures. How we look at pain images, diagnostic or patient-produced, implicates a politics of care and power relationships among the creator, viewer, and subject of the image. It is our obligation as viewers to not just look at the images in isolation, but at the relationships underlying the images.