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  1. (1 other version)Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV.Lainie Friedman Ross - 2001 - Journal of Law, Medicine and Ethics 29 (2):141-148.
    The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...)
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  • (1 other version)What Lessons Can We Learn from the Exceptionalism Debate (Finally)?Zita Lazzarini - 2001 - Journal of Law, Medicine and Ethics 29 (2):149-151.
    How we integrate the astounding advances that genetics makes possible into our language, our conceptions of health and disease, and our systems to collect, control, and protect health-related information is a key question facing health law and policy-makers this decade.For example, the prospect that all of us may harbor the genetic seeds of our own demise forces us to confront the blurring of the lines between “health,” “predisposition,” and “disease.” How will we modify our conceptions of health and disease in (...)
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  • HIV exceptionalism, CD4+ cell testing, and conscientious subversion.L. A. Jansen - 2005 - Journal of Medical Ethics 31 (6):322-326.
    In recent years, many states in the United States have passed legislation requiring laboratories to report the names of patients with low CD4 cell counts to their state Departments of Health. This name reporting is an integral part of the growing number of “HIV Reporting and Partner Notification Laws” which have emerged in response to recently revised guidelines suggested by the National Centers for Disease Control (CDC). Name reporting for patients with low CD4 cell counts allows for a more accurate (...)
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  • The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
    In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...)
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  • New European guidelines for the use of stored human biological materials in biomedical research.C. Trouet - 2004 - Journal of Medical Ethics 30 (1):99-103.
    The increasing possibilities for using tissue for research and development in genetics and biotechnology have made stored human biological materials more important than ever. Using stored human biological materials raises many legal and ethical questions. On an international level however, the use of these materials has not been regulated in a detailed manner so far. The Council of Europe recently declassified the text of the proposal for an instrument on the use of archived human biological materials in biomedical research for (...)
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  • Ethical issues in tissue banking for research: A brief review of existing organizational policies.Keith Bauer, Sara Taub & Kayhan Parsi - 2004 - Theoretical Medicine and Bioethics 25 (2):113-142.
    Based on a general review of international, representative tissue banking policies that were described in the medical, ethics, and legal literature, this paper reviews the range of standards, both conceptually and in existing regulations, relevant to four main factors:(1) commercialization, (2) confidentiality, (3) informed consent, and (4) quality of research. These four factors were selected as reflective of some of the major ethical considerations that arise in the conduct of tissue banking research. The authors emphasize that any policy or ethical (...)
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