View Item 

Show simple item record

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject
dc.contributor.authorScollon, Sarahen_US
dc.contributor.authorBergstrom, Katieen_US
dc.contributor.authorMcCullough, Laurence B.en_US
dc.contributor.authorMcGuire, Amy L.en_US
dc.contributor.authorGutierrez, Stephanieen_US
dc.contributor.authorKerstein, Robinen_US
dc.contributor.authorParsons, D. Williamsen_US
dc.contributor.authorPlon, Sharon E.en_US
dc.date.accessioned2015-11-12T21:04:03Z
dc.date.available2016-11-01T16:43:14Zen
dc.date.issued2015-09en_US
dc.identifier.citationScollon, 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.issn1073-1105en_US
dc.identifier.issn1748-720Xen_US
dc.identifier.urihttps://hdl.handle.net/2027.42/115941
dc.publisherWiley Periodicals, Inc.en_US
dc.titlePediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subjecten_US
dc.typeArticleen_US
dc.rights.robotsIndexNoFollowen_US
dc.subject.hlbsecondlevelLaw and Legal Studiesen_US
dc.subject.hlbsecondlevelMedicine (General)
dc.subject.hlbtoplevelGovernment, Politics and Lawen_US
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Revieweden_US
dc.description.bitstreamurlhttp://deepblue.lib.umich.edu/bitstream/2027.42/115941/1/jlme12295.pdf
dc.identifier.doi10.1111/jlme.12295en_US
dc.identifier.sourceThe Journal of Law, Medicine & Ethicsen_US
dc.identifier.citedreferenceM. H. Zawati et al., “ The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives,” BMC Medical Ethics 15 ( 2014 ): 72.en_US
dc.identifier.citedreferenceN. L. Allen et al., “ Biobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives from the OurGenes, OurHealth, OurCommunity Project,” Mayo Clinic Proceedings 89, no. 6 ( 2014 ): 738 – 746.en_US
dc.identifier.citedreferenceE. Ormondroyd et al., “ Disclosure of Genetics Research Results after the Death of the Patient Participant: A Qualitative Study of the Impact on Relatives,” Journal of Genetic Counseling 16, no. 4 ( 2007 ): 527 – 538.en_US
dc.identifier.citedreferenceC. V. Fernandez et al., “ Attitudes of Parents toward the Return of Targeted and Incidental Genomic Research Findings in Children,” Genetics in Medicine 16, no. 8 ( 2014 ): 633 – 640.en_US
dc.identifier.citedreferenceL. L. Wang et al., “ Clinical Manifestations in a Cohort of 41 Rothmund‐Thomson Syndrome Patients,” American Journal of Medical Genetics 102, no. 1 ( 2001 ): 11 – 17.en_US
dc.identifier.citedreferenceI. Cumin et al., “ Rothmund‐Thomson Syndrome and Osteosarcoma,” Medical and Pediatric Oncology 26, no. 6 ( 1996 ): 414 – 416; A. Leonard., “Osteogenic Sarcoma in the Rothmund‐Thomson Syndrome,” Medical and Pediatric Oncology 26, no. 4 (1996): 249–253; J. S. Green et al., “Rothmund‐Thomson Syndrome Complicated by Osteosarcoma,” Pediatric Radiology 28, no. 1 (1998): 48–50.en_US
dc.identifier.citedreferenceS. Kitao et al., “ Rothmund‐Thomson Syndrome Responsible Gene, RECQL4: Genomic Structure and products,” Genomics 61, no. 3 ( 1999 ): 268 – 276.en_US
dc.identifier.citedreferenceL. L. Wang et al., “ Association between Osteosarcoma and Deleterious Mutations in the RECQL4 Gene in Rothmund‐Thomson Syndrome,” Journal of the National Cancer Institute 95, no. 9 ( 2003 ): 669 – 674.en_US
dc.identifier.citedreferenceV. 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.citedreferenceS. 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
dc.identifier.citedreferenceY. Yang et al., “ Clinical Whole‐Exome Sequencing for the Diagnosis of Mendelian Disorders,” New England Journal of Medicine 369, no. 16 ( 2013 ): 1502 – 1511.en_US
dc.identifier.citedreferenceJ. 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.citedreferenceId. 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.citedreferenceD. 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.citedreferenceId.en_US
dc.identifier.citedreferenceB. 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.citedreferenceZawati 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.citedreferenceA. L. McGuire et al., “ Returning Genetic Research Results: Study Type Matters,” Personalized Medicine 10, no. 1 ( 2013 ): 27 – 34.en_US
dc.identifier.citedreferenceS. 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.citedreferenceAvard et al., supra note 22.en_US
dc.identifier.citedreferenceL. 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
dc.identifier.citedreferenceF. A. Chervenak et al., “ Clinical Guides to Preventing Ethical Conflict between Pregnant Women and Their Physicians,” American Journal of Obstetrics and Gynecology 162, no. 2 ( 1990 ): 303 – 307.en_US
dc.identifier.citedreferenceB. 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.citedreferenceU.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.citedreferenceAmerican 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.citedreferencePate v. Threlkel, 661 So.2d 278 (Fla. 1995); Safer v. Pack, 677 A.2d 1188 (NJ 1996).en_US
dc.identifier.citedreferenceTexas 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.citedreference45 C.F.R. § 46.102 (2014).en_US
dc.owningcollnameInterdisciplinary and Peer-Reviewed


Files in this item

Name:
jlme12295.pdf
Size:
169.8KB
Format:
PDF
View/Open

Show simple item record

Remediation of Harmful Language

The University of Michigan Library aims to describe library materials in a way that respects the people and communities who create, use, and are represented in our collections. Report harmful or offensive language in catalog records, finding aids, or elsewhere in our collections anonymously through our metadata feedback form. More information at Remediation of Harmful Language.

Accessibility

If you are unable to use this file in its current format, please select the Contact Us link and we can modify it to make it more accessible to you.