Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject
dc.contributor.author | Scollon, Sarah | en_US |
dc.contributor.author | Bergstrom, Katie | en_US |
dc.contributor.author | McCullough, Laurence B. | en_US |
dc.contributor.author | McGuire, Amy L. | en_US |
dc.contributor.author | Gutierrez, Stephanie | en_US |
dc.contributor.author | Kerstein, Robin | en_US |
dc.contributor.author | Parsons, D. Williams | en_US |
dc.contributor.author | Plon, Sharon E. | en_US |
dc.date.accessioned | 2015-11-12T21:04:03Z | |
dc.date.available | 2016-11-01T16:43:14Z | en |
dc.date.issued | 2015-09 | en_US |
dc.identifier.citation | Scollon, Sarah; Bergstrom, Katie; McCullough, Laurence B.; McGuire, Amy L.; Gutierrez, Stephanie; Kerstein, Robin; Parsons, D. Williams; Plon, Sharon E. (2015). "Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject." The Journal of Law, Medicine & Ethics 43(3): 529-537. | en_US |
dc.identifier.issn | 1073-1105 | en_US |
dc.identifier.issn | 1748-720X | en_US |
dc.identifier.uri | https://hdl.handle.net/2027.42/115941 | |
dc.publisher | Wiley Periodicals, Inc. | en_US |
dc.title | Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject | en_US |
dc.type | Article | en_US |
dc.rights.robots | IndexNoFollow | en_US |
dc.subject.hlbsecondlevel | Law and Legal Studies | en_US |
dc.subject.hlbsecondlevel | Medicine (General) | |
dc.subject.hlbtoplevel | Government, Politics and Law | en_US |
dc.subject.hlbtoplevel | Health Sciences | |
dc.description.peerreviewed | Peer Reviewed | en_US |
dc.description.bitstreamurl | http://deepblue.lib.umich.edu/bitstream/2027.42/115941/1/jlme12295.pdf | |
dc.identifier.doi | 10.1111/jlme.12295 | en_US |
dc.identifier.source | The Journal of Law, Medicine & Ethics | en_US |
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dc.identifier.citedreference | V. Sanchini et al., “ Informed Consent as an Ethical Requirement in Clinical Trials: An Old, But Still Unresolved Issue. An Observational Study to Evaluate Patient's Informed Consent Comprehension,” Journal of Medical Ethics 40, no. 4 ( 2014 ): 269 – 275. | en_US |
dc.identifier.citedreference | S. Scollon et al., “ Obtaining Informed Consent for Clinical Tumor and Germline Exome Sequencing of Newly Diagnosed Childhood Cancer Patients,” Genome Medicine 6, no. 9 ( 2014 ): 69. | en_US |
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dc.identifier.citedreference | J. D. Wasserman et al., “ Prevalence and Functional Consequence of TP53 Mutations in Pediatric Adrenocortical Carcinoma: A Children's Oncology Group Study,” Journal of Clinical Oncology 33, no. 6 ( 2015 ): 602 – 609. | en_US |
dc.identifier.citedreference | Id. citing L. F. Ross et al., “Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children,” Genetics in Medicine 15, no. 3 (2013): 234–245. | en_US |
dc.identifier.citedreference | D. Avard et al., “ Pediatric Research and the Return of Individual Research Results,” Journal of Law, Medicine & Ethics 39, no. 4 ( 2011 ): 593 – 604, at 601. | en_US |
dc.identifier.citedreference | Id. | en_US |
dc.identifier.citedreference | B. Chan et al., “ Genomic Inheritances: Disclosing Individual Research Results from Whole‐Exome Sequencing to Deceased Participants' Relatives,” American Journal of Bioethics 12, no. 10 ( 2012 ): 1 – 8; G. P. Jarvik et al., “Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices in Between,” American Journal of Human Genetics 94, no. 6 (2014): 818–826. | en_US |
dc.identifier.citedreference | Zawati et al., supra note 20; E. W. Clayton et al., “Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children,” American Journal of Bioethics 14, no. 3 (2014): 3–9. | en_US |
dc.identifier.citedreference | A. L. McGuire et al., “ Returning Genetic Research Results: Study Type Matters,” Personalized Medicine 10, no. 1 ( 2013 ): 27 – 34. | en_US |
dc.identifier.citedreference | S. M. Wolf, “ Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science,” Annual Review of Genomics and Human Genetics 14 ( 2013 ): 557 – 577. | en_US |
dc.identifier.citedreference | Avard et al., supra note 22. | en_US |
dc.identifier.citedreference | L. B. McCullough, “ An Ethical Framework for the Responsible Leadership of Accountable Care Organizations,” American Journal of Medical Quality 27, no. 3 ( 2012 ): 189 – 194. | en_US |
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dc.identifier.citedreference | B. D. Riley et al., “ Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors,” Journal of Genetic Counseling 21, no. 2 ( 2012 ): 151 – 161. | en_US |
dc.identifier.citedreference | U.S. Department of Health & Human Services, “Health Information of Deceased Individuals,” available at < http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/decedents.html > (last visited August 19, 2015). | en_US |
dc.identifier.citedreference | American Medical Association, Opinion 5.051 – Confidentiality of Medical Information Postmortem, available at < http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion5051.page? > (last visited August 19, 2015). | en_US |
dc.identifier.citedreference | Pate v. Threlkel, 661 So.2d 278 (Fla. 1995); Safer v. Pack, 677 A.2d 1188 (NJ 1996). | en_US |
dc.identifier.citedreference | Texas Constitution and Statutes, TX. Labor Code. Sec. 21.4031 Exceptions to Confidentiality, available at < http://www.statutes.legis.state.tx.us/Docs/LA/htm/LA.21.htm#21.401 > (last visited August 19, 2015). | en_US |
dc.identifier.citedreference | 45 C.F.R. § 46.102 (2014). | en_US |
dc.owningcollname | Interdisciplinary and Peer-Reviewed |
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