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  1. Biobanking Research and Privacy Laws in the United States.Heather L. Harrell & Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (1):106-127.
    Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act Privacy Rule and the Federal Policy for Protection of Human Subjects. Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect privacy. In addition, many other (...)
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  • The Devil is in the Details: Confidentiality Challenges in the Age of Genetics.Barbara J. Daly, Ashley Rosko, Shulin Zhang & Hillard M. Lazarus - 2015 - HEC Forum 27 (1):79-86.
    This clinical case report illustrates the potential dilemmas that can arise from knowledge gained through genetic analysis. These conflicts require careful ethical analysis of presumed duties to protect patient privacy and maintain confidentiality, the duty to warn a second party of a health risk, and the duty of veracity. While the questions raised by genetic testing of one individual for disease that reveals potentially important information about relatives, such as risk for Huntington chorea or breast cancer, have been discussed, the (...)
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