Browsing by Subject "Confidentiality"
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Item Addressing privacy challenges in healthcare through the lens of contextual integrity(2023-02-14) Nissenbaum, Helen[Note: The slide presentation is not available from this event.] In healthcare, as in other social spheres, digital technology has posed dire challenges to entrenched approaches to privacy. Yet, as a fundamental cornerstone of ethical healthcare, privacy cannot be allowed to erode. The theory of contextual integrity (CI), which defines privacy as appropriate flow of personal information answers the need for a meaningful concept of privacy that, simultaneously explains its value to individuals and to societies. CI requires that we bend away from one-dimensional ideas, which for decades have gripped the privacy domain, namely, control over information about ourselves, stoppage of flow, or fetishization of specific, "sensitive" attributes (e.g., identity, health). This lecture will review key ideas behind CI, contrast it with alternative accounts, and apply these ideas to the domain of intensive health care and health research domains, distinctive not only for their societal importance but for their ages-long attentiveness to privacy.Item Ethical issues in the health care professional/law enforcement relationship: reflections from emergency medicine(2019-05-14) Derse, Arthur R.[Note: The video is not available from this event.] Health care professionals (including emergency physicians) may have frequent interactions with police officers who are investigating alleged crimes. These officers may make requests or demands of health care professionals regarding patients. How should health care professionals respond to these demands? When should health care professionals comply and when should they refuse demands from law enforcement? What should be done when these demands conflict with what we health care professionals understand to be our professional obligations to our patients? What ethical and legal challenges arise and how should they be analyzed and, if possible, resolved?Item Ethics of smart pills and the dawn of surveillance medicine(2019-10-08) Klugman, Craig M.This presentation will explore the ethics of digital medicine--technology represented by pills that alter our bodily functions alongside sensors that not only collect data about our bodies, but share it with our physicians, family and friends. With FDA approval of the Abilify MyCite system in November 2017, pills now interact with cell phones to track medication adherence, but at what cost? Surveillance medicine stands to redefine the physician patient relationships and raises a host of new ethical issues such as redefining notions of privacy, confidentiality, vulnerability, trust, autonomy, consent, data and device management, dependability, physician autonomy, and equity in access to treatment. This presentation introduces attendees to these technologies and explores the ethical and professional challenges raised as they become more ubiquitous.Item Self-Disclosure, Secrecy, and Parental Knowledge in Caucasian and Latino Youth Managing Type 1 Diabetes(2013-07-29) Tucker, Christy; Wiebe, Deborah J.; Stewart, Sunita M.; Kennard, Beth D.; Reed, Gabriela; Caughy, Margaret O.A qualitative and quantitative examination of self-disclosure and secrecy was conducted to gain insight into their connections with parental knowledge and adolescent type 1 diabetes management. This is the first study to examine adolescent diabetes-related disclosure and secrecy in a diverse sample while considering the broader context of the parent-adolescent relationship. Participants were Caucasian and Latina mothers and their adolescents with type 1 diabetes (N = 118 dyads, 48% Latino, 54% female adolescents, 10 to 15 years old, illness duration > 1 year, 25% on insulin pump). Qualitative data consisted of coding adolescent responses to interview questions about two self-identified diabetes-related stressful events: “Does your mother (father) know about this stressful event?” and “As far as you know, how did your mother (father) find out?” Quantitative data included adolescent responses to questionnaires measuring diabetes self-disclosure to and secrecy from mothers and fathers, maternal and paternal knowledge, maternal and paternal acceptance (i.e. relationship quality), adherence, and depressive symptoms. Mothers also completed a maternal knowledge questionnaire and HbA1c was extracted from medical records. Sociodemographic data were collected by adolescent and maternal reports. Qualitative analysis revealed 10 ways in which parents came to know of their adolescents’ diabetes-related stressful events. For both stressful events, adolescent disclosed to parent was the most common code for mothers’ and fathers’ knowledge, mother present-observes was the second most frequent code for mothers, and mother discloses to father was the second most frequent code for fathers. Self-disclosure and secrecy predicted adolescent reports of maternal and paternal knowledge, whereas only self-disclosure and not secrecy predicted maternal reports of her own knowledge. Self-disclosure but not secrecy was associated with HbA1c, and secrecy but not self-disclosure was related to adherence, independent of both parental knowledge and acceptance. Although higher self-disclosure to mothers and lower secrecy to fathers were correlated with lower depressive symptoms, these associations were not statistically reliable after covarying parental acceptance and/or knowledge. These results provide a more thorough understanding of the relationship between adolescent self-disclosure and secrecy with health outcomes, raise questions about the focus on parental monitoring in interventions to improve diabetes management during adolescence, and point to important directions for future research.Item Whose hands are on your genes?(2008-06-27) Karp, David R.