Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.
作者信息
Burke Wylie, Beskow Laura M, Trinidad Susan Brown, Fullerton Stephanie M, Brelsford Kathleen
机构信息
Department of Bioethics and Humanities, Box 357120, University of Washington, Seattle WA 98195; Work phone: 206-221-5482; Home phone 206-232-6760; Cell phone: 206-619-3191.
Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, 2525 West End Aves, Suite 400, Nashville TN 37203; Work phone: 615-936-2686.
出版信息
J Law Med Ethics. 2018 Mar;46(1):79-86. doi: 10.1177/1073110518766023. Epub 2018 Mar 27.
Abstract
摘要
相似文献
1
Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.
J Law Med Ethics. 2018 Mar;46(1):79-86. doi: 10.1177/1073110518766023. Epub 2018 Mar 27.
2
The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.
J Law Med Ethics. 2014 Fall;42(3):344-55. doi: 10.1111/jlme.12151.
3
A framework for tiered informed consent for health genomic research in Africa.
Nat Genet. 2019 Nov;51(11):1566-1571. doi: 10.1038/s41588-019-0520-x.
4
Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.
J Med Ethics. 2016 Feb;42(2):132-7. doi: 10.1136/medethics-2015-102796. Epub 2015 Dec 7.
5
Participants' recall and understanding of genomic research and large-scale data sharing.
J Empir Res Hum Res Ethics. 2013 Oct;8(4):42-52. doi: 10.1525/jer.2013.8.4.42.
6
Ethical endgames: broad consent for narrow interests; open consent for closed minds.
Camb Q Healthc Ethics. 2011 Oct;20(4):572-83. doi: 10.1017/S0963180111000314.
7
In defense of broad consent.
Camb Q Healthc Ethics. 2012 Jan;21(1):40-50. doi: 10.1017/S096318011100048X.
8
Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.
J Law Med Ethics. 2018 Mar;46(1):87-109. doi: 10.1177/1073110518766024. Epub 2018 Mar 27.
9
Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent.
EMBO Rep. 2010 Jun;11(6):416-9. doi: 10.1038/embor.2010.69. Epub 2010 May 7.
10
Research ethics. Research practice and participant preferences: the growing gulf.
Science. 2011 Jan 21;331(6015):287-8. doi: 10.1126/science.1199000.
引用本文的文献
1
Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.
BMC Med Ethics. 2025 Jul 19;26(1):99. doi: 10.1186/s12910-025-01170-z.
2
Towards trustworthiness of precision medicine research for people with disabilities.
Nat Genet. 2025 Jun;57(6):1321-1324. doi: 10.1038/s41588-025-02195-1.
3
Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.
Am J Intellect Dev Disabil. 2025 May 1;130(3):171-177. doi: 10.1352/1944-7558-130.3.171.
4
A Just Genomics Needs an ELSI of Translation.
Hastings Cent Rep. 2024 Dec;54 Suppl 2:S126-S135. doi: 10.1002/hast.4938.
5
Ethical governance for genomic data science in the cloud.
Nat Rev Genet. 2025 Feb;26(2):75-77. doi: 10.1038/s41576-024-00789-9.
6
No person left behind: Mapping the health policy landscape for genomics research in the Caribbean.
Lancet Reg Health Am. 2022 Sep 18;15:100367. doi: 10.1016/j.lana.2022.100367. eCollection 2022 Nov.
7
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.
Genome Med. 2021 May 25;13(1):92. doi: 10.1186/s13073-021-00903-0.
8
Access and Management: Indigenous Perspectives on Genomic Data Sharing.
Ethn Dis. 2019 Dec 12;29(Suppl 3):659-668. doi: 10.18865/ed.29.S3.659. eCollection 2019.
9
A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research.
Front Genet. 2019 Apr 5;10:289. doi: 10.3389/fgene.2019.00289. eCollection 2019.
10
Return of individual genomic research results: are laws and policies keeping step?
Eur J Hum Genet. 2019 Apr;27(4):535-546. doi: 10.1038/s41431-018-0311-3. Epub 2019 Jan 8.
本文引用的文献
1
ACMG secondary findings 2.0.
Genet Med. 2017 May;19(5):604. doi: 10.1038/gim.2017.27. Epub 2017 Apr 13.
2
Evolving health care through personal genomics.
Nat Rev Genet. 2017 Apr;18(4):259-267. doi: 10.1038/nrg.2016.162. Epub 2017 Jan 31.
3
The Precision Medicine Initiative's All of Us Research Program: an agenda for research on its ethical, legal, and social issues.
Genet Med. 2017 Jul;19(7):743-750. doi: 10.1038/gim.2016.183. Epub 2016 Dec 8.
4
The dbGaP data browser: a new tool for browsing dbGaP controlled-access genomic data.
Nucleic Acids Res. 2017 Jan 4;45(D1):D819-D826. doi: 10.1093/nar/gkw1139. Epub 2016 Nov 29.
5
Precision medicine, genomics and drug discovery.
Hum Mol Genet. 2016 Oct 1;25(R2):R166-R172. doi: 10.1093/hmg/ddw246. Epub 2016 Aug 18.
6
Mapping ethical and social aspects of cancer biomarkers.
N Biotechnol. 2016 Dec 25;33(6):763-772. doi: 10.1016/j.nbt.2016.06.1458. Epub 2016 Jun 16.
7
Genome-wide association study identifies 74 loci associated with educational attainment.
Nature. 2016 May 26;533(7604):539-42. doi: 10.1038/nature17671. Epub 2016 May 11.
8
Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.
Am J Hum Genet. 2016 Jun 2;98(6):1051-1066. doi: 10.1016/j.ajhg.2016.04.011. Epub 2016 May 12.
9
The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis.
BMJ. 2016 Mar 15;352:i1102. doi: 10.1136/bmj.i1102.
10
Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.
J Pers Med. 2015 Jul 28;5(3):264-79. doi: 10.3390/jpm5030264.
Zotero 插件