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The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.参与遗传生物库的家长的信念、动机和期望。
Genet Med. 2012 Mar;14(3):330-7. doi: 10.1038/gim.2011.25. Epub 2012 Jan 26.
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Biobanking in pediatrics: the human nonsubjects approach.儿科生物样本库：人类非受试者方法。
Per Med. 2011 Jan;8(1):79. doi: 10.2217/pme.10.70.
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Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.向研究参与者报告基因研究结果的伦理与实践指南：美国国立心肺血液研究所工作组的更新指南
Circ Cardiovasc Genet. 2010 Dec;3(6):574-80. doi: 10.1161/CIRCGENETICS.110.958827.
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Evaluation of the validity and utility of genetic testing for rare diseases.评估罕见病基因检测的有效性和实用性。
Adv Exp Med Biol. 2010;686:115-31. doi: 10.1007/978-90-481-9485-8_8.
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Multidimensional results reporting to participants in genomic studies: getting it right.基因组研究中向参与者报告多维结果：正确处理。
Sci Transl Med. 2010 Jun 23;2(37):37cm19. doi: 10.1126/scitranslmed.3000809.
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Personal utility and genomic information: look before you leap.个人效用与基因组信息：三思而后行。
Genet Med. 2009 Aug;11(8):575-6. doi: 10.1097/GIM.0b013e3181af0a80.
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The Scientific Foundation for personal genomics: recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop.个人基因组学的科学基础：美国国立卫生研究院-疾病控制与预防中心多学科研讨会的建议。
Genet Med. 2009 Aug;11(8):559-67. doi: 10.1097/GIM.0b013e3181b13a6c.
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Evaluating the utility of personal genomic information.评估个人基因组信息的效用。
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Research ethics recommendations for whole-genome research: consensus statement.全基因组研究的研究伦理建议：共识声明
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The Informed Cohort Oversight Board: From Values to Architecture.

作者信息

Holm Ingrid A, Taylor Patrick L

机构信息

Dr. Holm is a principal investigator for The Gene Partnership (TGP), described herein. She is also affiliated with the following: Division of Genetics and Program in Genomics, Children's Hospital Boston; Department of Pediatrics, Harvard Medical School; The Manton Center for Orphan Disease Research, Children's Hospital Boston.

Mr. Taylor is a co-investigator of TGP and chair of the Informed Cohort Oversight Board (ICOB) from the ICOB's inception through the period described in this paper. He is also affiliated with the following: Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Harvard Law School; Department of Pediatrics, Harvard Medical School; Children's Hospital Informatics Program, Children's Hospital Boston.

出版信息

Minn J Law Sci Technol. 2012 Spring;13(2):669-690.

PMID:24371432
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3872117/
Abstract
摘要