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澳大利亚议会关于线粒体捐赠法律改革(梅芙法案) 2021 年的调查:定性分析。

The Parliamentary Inquiry into Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 in Australia: A Qualitative Analysis.

机构信息

Monash University, Wellington Rd, Clayton, Australia.

Biomedical Ethics Research Group, Murdoch Children's Research Institute, Parkville, Australia.

出版信息

J Bioeth Inq. 2024 Mar;21(1):67-80. doi: 10.1007/s11673-023-10257-4. Epub 2023 Aug 2.

DOI:10.1007/s11673-023-10257-4
PMID:37530962
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11052762/
Abstract

Recently, Australia became the second jurisdiction worldwide to legalize the use of mitochondrial donation technology. The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 allows individuals with a family history of mitochondrial disease to access assisted reproductive techniques that prevent the inheritance of mitochondrial disease. Using inductive content analysis, we assessed submissions sent to the Senate Committee as part of a programme of scientific inquiry and public consultation that informed drafting of the Bill. These submissions discussed a range of bioethical and legal considerations of central importance to the political debate. Significantly, submissions from those with a first-hand experience of mitochondrial disease, including clinicians and those with a family history of mitochondrial disease, were in strong support of this legislation. Those in support of the Bill commended the two-staged approach and rigorous licencing requirements as part of the Bill's implementation strategy. Submissions which outlined arguments against the legislation either opposed the use of these techniques in general or opposed aspects of the implementation strategy in Australia. These findings offer a window into the ethical arguments and perspectives that matter most to those Australians who took part in the Senate inquiry into mitochondrial donation. The insights garnered from these submissions may be used to help refine policy and guidelines as the field progresses.

摘要

最近,澳大利亚成为全球第二个将线粒体捐赠技术合法化的司法管辖区。2021 年《线粒体捐赠法改革(梅芙法案)》允许有家族线粒体疾病史的个人获得可预防线粒体疾病遗传的辅助生殖技术。本研究采用归纳内容分析法,评估了作为科学调查和公众咨询计划的一部分提交给参议院委员会的意见,该计划为法案的起草提供了信息。这些意见书讨论了对政治辩论具有核心重要性的一系列生物伦理和法律问题。值得注意的是,那些对线粒体疾病有第一手经验的人,包括临床医生和有家族线粒体疾病史的人,都强烈支持这项立法。支持该法案的人称赞该法案的分两个阶段实施和严格的许可要求,这是该法案实施策略的一部分。概述反对该立法的论点的意见书要么反对一般使用这些技术,要么反对澳大利亚实施策略的某些方面。这些发现为那些参与参议院线粒体捐赠调查的澳大利亚人最关心的伦理论点和观点提供了一个窗口。从这些意见书收集到的见解可用于帮助完善该领域的政策和准则。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cc13/11052762/a493ec2ab87f/11673_2023_10257_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cc13/11052762/a493ec2ab87f/11673_2023_10257_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cc13/11052762/a493ec2ab87f/11673_2023_10257_Fig1_HTML.jpg

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本文引用的文献

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Ethical implementation of mitochondrial donation in Australia.澳大利亚线粒体捐赠的伦理实施。
Aust N Z J Obstet Gynaecol. 2022 Dec;62(6):921-924. doi: 10.1111/ajo.13603. Epub 2022 Aug 16.
2
Gendering the seed: Mitochondrial replacement techniques and the erasure of the maternal.赋予种子性别:线粒体替换技术与母体的抹除
Bioethics. 2021 Sep;35(7):608-614. doi: 10.1111/bioe.12868. Epub 2021 May 4.
3
Public attitudes towards novel reproductive technologies: a citizens' jury on mitochondrial donation.公众对新型生殖技术的态度:关于线粒体捐赠的公民陪审团。
Hum Reprod. 2019 Apr 1;34(4):751-757. doi: 10.1093/humrep/dez021.
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The need for donor consent in mitochondrial replacement.线粒体替换中供体同意的必要性。
J Med Ethics. 2018 Dec;44(12):825-829. doi: 10.1136/medethics-2017-104661. Epub 2018 Jul 12.
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Mandatory sex selection and mitochondrial transfer.强制性别选择与线粒体转移。
Bioethics. 2018 Sep;32(7):437-444. doi: 10.1111/bioe.12462. Epub 2018 Jul 6.
6
Lesbian motherhood and mitochondrial replacement techniques: reproductive freedom and genetic kinship.女同性恋者的生育和线粒体替代技术:生殖自由与基因亲缘关系。
J Med Ethics. 2018 Dec;44(12):835-842. doi: 10.1136/medethics-2017-104450. Epub 2018 Feb 28.
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Should Mitochondrial Donation Be Anonymous?线粒体捐赠应该匿名吗?
J Med Philos. 2018 Mar 13;43(2):261-280. doi: 10.1093/jmp/jhx022.
8
Ethical and legal issues in mitochondrial transfer.线粒体转移中的伦理和法律问题。
EMBO Mol Med. 2016 Jun 1;8(6):589-91. doi: 10.15252/emmm.201606281. Print 2016 Jun.