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Next-generation sequencing: does the next generation still have a right to an open future?

作者信息

Bredenoord Annelien L, de Vries Martine C, van Delden Johannes J M

机构信息

University Medical Center Utrecht, Julius Center, Department of Medical Ethics, PO Box 85500, 3508 GA Utrecht, The Netherlands.

出版信息

Nat Rev Genet. 2013 May;14(5):306. doi: 10.1038/nrg3459.

DOI:10.1038/nrg3459
PMID:23729034
Abstract
摘要

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Next-generation sequencing: does the next generation still have a right to an open future?下一代测序技术：下一代是否仍有权拥有一个开放的未来？
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The coming explosion in genetic testing--is there a duty to recontact?基因检测即将迎来的爆发——是否有再次联系的义务？
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Disclosure of non-paternity.
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Support for full disclosure up front.一开始就支持全面披露。
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The authors reply.作者回复。
Hastings Cent Rep. 2015 Jan-Feb;45(1):4. doi: 10.1002/hast.408.
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Disclosure of Misattributed Paternity.亲权误认之揭露。
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MSJAMA. Between a rock and a hard place.《美国医学会杂志》。进退两难。
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[Genetic diagnostic: to know or not to know?].
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Hope, but never expect? Comparing parents' pre- and post-disclosure attitudes toward return of results from diagnostic exome sequencing for their child.抱有希望，但不要期望过高？比较父母在对孩子进行外显子组测序诊断后披露结果前后的态度。
Mol Genet Genomic Med. 2024 Mar;12(3):e2341. doi: 10.1002/mgg3.2341. Epub 2024 Feb 17.
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The ethical aspects of exposome research: a systematic review.暴露组研究的伦理问题：一项系统综述。
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Factors that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey.

本文引用的文献

1
Diagnostic exome sequencing in persons with severe intellectual disability.对严重智力障碍者进行外显子组诊断测序。
N Engl J Med. 2012 Nov 15;367(20):1921-9. doi: 10.1056/NEJMoa1206524. Epub 2012 Oct 3.
2
Diagnostic exome sequencing--are we there yet?诊断性外显子组测序——我们做到了吗？
N Engl J Med. 2012 Nov 15;367(20):1951-3. doi: 10.1056/NEJMe1211659. Epub 2012 Oct 3.
3
Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy.向研究参与者反馈个体基因结果：支持有条件的披露政策。
影响女性产前基因组检测决策的因素：一项国际离散选择调查。
Prenat Diagn. 2022 Jun;42(7):934-946. doi: 10.1002/pd.6159. Epub 2022 Apr 30.
4
'We Should View Him as an Individual': The Role of the Child's Future Autonomy in Shared Decision-Making About Unsolicited Findings in Pediatric Exome Sequencing.“我们应该将他视为一个个体”：儿科外显子组测序中未征求意见的发现的共享决策中儿童未来自主性的作用。
Health Care Anal. 2021 Sep;29(3):249-261. doi: 10.1007/s10728-020-00425-7. Epub 2021 Jan 2.
5
Preferences to receive unsolicited findings of germline genome sequencing in a large population of patients with cancer.在癌症患者的大人群中，对接收非邀约性胚系基因组测序结果的偏好。
ESMO Open. 2020 Apr;5(2). doi: 10.1136/esmoopen-2019-000619.
6
Rethinking the "open future" argument against predictive genetic testing of children.重新思考反对对儿童进行预测性基因检测的“开放未来”论点。
Genet Med. 2019 Oct;21(10):2190-2198. doi: 10.1038/s41436-019-0483-4. Epub 2019 Mar 21.
7
Perceived Benefits, Risks, and Utility of Newborn Genomic Sequencing in the BabySeq Project.新生儿基因组测序在 BabySeq 项目中的感知益处、风险和效用。
Pediatrics. 2019 Jan;143(Suppl 1):S6-S13. doi: 10.1542/peds.2018-1099C.
8
Implementation of personalized medicine in Central-Eastern Europe: pitfalls and potentials based on citizen's attitude.中东欧地区个性化医疗的实施：基于公民态度的陷阱与潜力
EPMA J. 2018 Feb 9;9(1):103-112. doi: 10.1007/s13167-017-0125-3. eCollection 2018 Mar.
9
Next-Generation Sequencing: The Translational Medicine Approach from "Bench to Bedside to Population".下一代测序技术：从“实验室到床边再到人群”的转化医学方法
Medicines (Basel). 2016 Jun 2;3(2):14. doi: 10.3390/medicines3020014.
10
Cancer patients' intentions towards receiving unsolicited genetic information obtained using next-generation sequencing.癌症患者对于接收通过下一代测序获得的主动提供的基因信息的意向。
Fam Cancer. 2018 Apr;17(2):309-316. doi: 10.1007/s10689-017-0033-7.
Hum Mutat. 2011 Aug;32(8):861-7. doi: 10.1002/humu.21518. Epub 2011 Jun 30.
4
Disclosure of individual genetic data to research participants: the debate reconsidered.向研究参与者披露个体基因数据：重新审议该争议。
Trends Genet. 2011 Feb;27(2):41-7. doi: 10.1016/j.tig.2010.11.004. Epub 2010 Dec 27.
5
Making a definitive diagnosis: successful clinical application of whole exome sequencing in a child with intractable inflammatory bowel disease.明确诊断：全外显子组测序在一例难治性炎症性肠病患儿中的成功临床应用。
Genet Med. 2011 Mar;13(3):255-62. doi: 10.1097/GIM.0b013e3182088158.
6
A timely arrival for genomic medicine.基因组医学的适时到来。
Genet Med. 2011 Mar;13(3):195-6. doi: 10.1097/GIM.0b013e3182095089.
7
From genetics to genomics: ethics, policy, and parental decision-making.从遗传学到基因组学：伦理、政策和父母决策。
J Pediatr Psychol. 2009 Jul;34(6):639-47. doi: 10.1093/jpepsy/jsn075. Epub 2008 Jul 22.
8
Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors.需要考虑的要点：儿童和青少年基因检测的伦理、法律及社会心理影响。美国人类遗传学会董事会、美国医学遗传学学院董事会。
Am J Hum Genet. 1995 Nov;57(5):1233-41.