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  1. Wanted: Human Biospecimens.Karen J. Maschke - 2010 - Hastings Center Report 40 (5):21-23.
    Collecting and using tissue, blood, urine, and other human biospecimens for various types of research is not new. But for personalized medicine to realize its potential, researchers will need thousands more of these samples for genetic studies. And the particular nature of genetic research—the sensitivity of the information it reveals—has raised a host of ethical questions, some which are new to human subjects research. What counts as informed consent when a biospecimen may be stored for years and used for unforeseen (...)
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  • Managing Patient Expectations About Deidentification.Harald Schmidt & Shawneequa L. Callier - 2010 - American Journal of Bioethics 10 (9):21-23.
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  • Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research.Sara Chandros Hull, Richard Sharp, Jeffrey Botkin, Mark Brown, Mark Hughes, Jeremy Sugarman, Debra Schwinn, Pamela Sankar, Dragana Bolcic-Jankovic, Brian Clarridge & Benjamin Wilfond - 2008 - American Journal of Bioethics 8 (10):62-70.
    It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...)
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