Browsing by Subject "Ethical issues"

Now showing 1 - 10 of 19
  • Thumbnail Image
    Item
    Biobanks and Electronic Health Records: Ethical and Policy Challenges in the Genomic Age
    (IU Center for Applied Cybersecurity Research, 2009-10) Meslin, Eric M.; Goodman, Kenneth
    In this paper we discuss the ethical and policy challenges presented by the construction and use of biobanks and electronic health records systems, with a particular focus on how these resources implicate certain types of security concerns for patients, families, health care providers and institutions. These two technology platforms are selected for special emphasis in this paper for two reasons. First and foremost, there is a close connection between them. Indeed, of the many accepted definitions, this one from the German National Bioethics Commission provides a sense of this close connection and the great power and reflects the great power these two separate platforms provide to probe more deeply the connection between genotype and phenotype: "...[B]iobanks are defined as collections of samples of human bodily substances (e.g., cells, tissues, blood or DNA as the physical medium of genetic information) that are or can be associated with personal data and information on their donors." Second, these two topics implicate both clinical ethics issues (those arising at the bedside for health care providers and patients), and human research ethics issues (issues arising for scientists, research subjects, ethics review bodies and regulatory authorities). Both of these sub-specialty areas confront similar and complementary ethical issues; for example, issues arising from the nature and adequacy of informed consent, the sufficiency of systems to protect personal privacy and confidentiality, or the need to balance concerns relating to data security and the need to know. A growing research base supports calls for more attention to these issues, and yet current professional ethics frameworks and policy consultation methods are poorly organized and ill-equipped to anticipate and fully address ethical issues in health information technology generally, or to provide adequate ethical assessment of the tools that elicit these issues. Our strategy is to orient readers to the history and context of these issues, to frame several key challenges for researchers and policy makers, and then to close with several recommendations for next steps.
  • No Thumbnail Available
    Item
    Confronting the ethics of pandemic influenza planning
    (2008-07-24T14:46:15Z) Monroe, Judith A.
  • Thumbnail Image
    Item
    Confronting the ethics of pandemic influenza planning: communiqué from the 2008 Summit of the States
    (Indiana University Center for Bioethics, 2008-07)
    Recognizing the vital role that public health departments play in planning for an outbreak of pandemic influenza, this “Summit of the States” was convened on July 14-15, 2008, on the campus of Indiana University-Purdue University Indianapolis (IUPUI) by the Association of State and Territorial Health Officials, the Indiana State Department of Health and the Indiana University Center for Bioethics. Invitations were extended to all 50 states, 6 territories and the District of Columbia. More than 150 delegates from 35 jurisdictions accepted, making this one of the largest gatherings of senior leadership from state and territorial public health departments ever convened to discuss the ethical issues in pandemic influenza planning.
  • No Thumbnail Available
    Item
    Ethical issues in pandemic influenza planning: four hot topics
    (2008-08-27T17:55:04Z) Gaffney, Margaret M.
  • No Thumbnail Available
    Item
  • No Thumbnail Available
    Item
    The ethics of pandemic influenza planning in Indiana: legal perspectives
    (2008-08-27T18:08:18Z) Kinney, Eleanor D.
  • No Thumbnail Available
    Item
    Incorporating ethics into planning: Indiana's approach
    (2008-08-27T18:15:39Z) Meslin, Eric M.
  • No Thumbnail Available
    Item
    Introduction to Indiana's pandemic influenza preparedness plan
    (2008-08-27T18:03:15Z) Hill, Mary L.
  • Thumbnail Image
    Item
    An Investigation of Legal and Ethical Issues with User-Generated Content and Other Forms of Electronically Stored Information Communicated via Social Media, Messaging Apps and Social Devices, Including the Internet of Things
    (2016-04-08) Faklaris, Cori; Hook, Sara Anne
    On social networking services, sharing is caring. However, depending on who or what is involved, sharing can be the source of a community transgression, copyright infringement, a violation of employment policies or worse. If people who use social media, mobile messaging apps and social devices do not know where the ethical or legal lines are drawn, in jurisprudence, in vendor Terms of Service, in professional codes of conduct or in keeping with online social norms, they are in jeopardy of being publicly shamed or even sued. Users may also put their employers, friends and colleagues at risk of community, professional or legal penalties in an era where the boundary between work and leisure is becoming even more blurred. This mixed-methods, interdisciplinary research project explores the current state of awareness on a range of legal and ethical issues involving User-Generated Content (UGC) and other forms of Electronically Stored Information (ESI) on social networks and devices for personal and enterprise use and for several different constituencies, including marketers, artists, journalists, academics, educators, entrepreneurs, bloggers, photographers and videographers. The quantitative, numeric data resulting from an online survey as well as qualitative, descriptive data gathered from semi-structured interviews with participants and observations gleaned in contextual inquiry will help address gaps in current research on this subject. In addition, the research findings will guide design directions for a tool, intervention or affordance to help users become better informed about privacy, intellectual property and information governance in the context of electronic sharing and more easily put this knowledge into practice. The first phase of developing the survey protocol is already underway, with a literature review completed and the survey submitted for IRB review as #1602921512. Pilot contextual inquiries and field studies are being pursued to guide development of qualitative research phases in the future. 1. Bohn, J., et al. Social, economic, and ethical implications of ambient intelligence and ubiquitous computing. Ambient Intelligence. Springer Berlin Heidelberg, 2005, 5-29. 2. Cohen, J.E. Configuring the Networked Self: Law, Code, and the Play of Everyday Practice. Yale University Press, 2012. 3. Erickson, T., and Kellogg, W.A. Social translucence: an approach to designing systems that support social processes. ACM Transactions on Computer-Human Interaction (TOCHI) 7.1 (2000): 5983. 4. Faklaris, C., and Hook, S.A. Oh, Snap! The State of Electronic Discovery Amid the Rise of Snapchat, WhatsApp, Kik and Other Mobile Messaging Apps. Federal Lawyer, May 2016 [in press]. 5. Fiesler, C., and Bruckman, A.S. Remixers' understandings of fair use online. Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work and Social Computing. ACM, 2014. 6. Hook, S.A., and Faklaris, C. Social Media, The Internet and Electronically Stored Information (ESI) Challenges. National Business Institute, 2015. Available at https://scholarworks.iupui.edu/handle/1805/7177.
  • No Thumbnail Available
    Item
    Minnesota pandemic ethics project: A look at vaccines
    (2008-07-23T20:44:16Z) Garrett, J. Eline