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  1. Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children.Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, Susan M. Wolf & For the Clinical Sequencing Exploratory Research Group - 2014 - American Journal of Bioethics 14 (3):3-9.
    American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or (...)
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  • In the Absence of Evidentiary Harm, Existing Societal Norms Regarding Parental Authority Should Prevail.Kimberly A. Strong, Arthur R. Derse, David P. Dimmock, Kaija L. Zusevics, Jessica Jeruzal, Elizabeth Worthey, David Bick, Gunter Scharer, Alison La Pean Kirschner, Ryan Spellecy, Michael H. Farrell, Jennifer Geurts, Regan Veith & Thomas May - 2014 - American Journal of Bioethics 14 (3):24-26.
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  • What Does the Duty to Warn Require?Seema K. Shah, Sara Chandros Hull, Michael A. Spinner, Benjamin E. Berkman, Lauren A. Sanchez, Ruquyyah Abdul-Karim, Amy P. Hsu, Reginald Claypool & Steven M. Holland - 2013 - American Journal of Bioethics 13 (10):62 - 63.
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  • HIPAA Privacy Rule 2.0.Mark A. Rothstein - 2013 - Journal of Law, Medicine and Ethics 41 (2):525-528.
    On January 25, 2013, the Federal Register published the Department of Health and Human Services omnibus amendments to the Health Insurance Portability and Accountability Act Privacy, Security, Enforcement, and Breach Notification Rules. These modifications also include the final versions of the HIPAA regulation amendments mandated by the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act. Although the amended rules were effective on March 26, 2013, covered entities and their business associates have a compliance (...)
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  • HIPAA Privacy Rule 2.0.Mark A. Rothstein - 2013 - Journal of Law, Medicine and Ethics 41 (2):525-528.
    On January 25, 2013, theFederal Registerpublished the Department of Health and Human Services omnibus amendments to the Health Insurance Portability and Accountability Act Privacy, Security, Enforcement, and Breach Notification Rules. These modifications also include the final versions of the HIPAA regulation amendments mandated by the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act. Although the amended rules were effective on March 26, 2013, covered entities and their business associates have a compliance date of (...)
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  • Currents in Contemporary Ethics GINA, the ADA, and Genetic Discrimination in Employment.Mark A. Rothstein - 2008 - Journal of Law, Medicine and Ethics 36 (4):837-840.
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  • Posthumous interests and posthumous respect.Ernest Partridge - 1981 - Ethics 91 (2):243-264.
  • Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):464-475.
    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.
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