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直接面向消费者的基因检测和自由放任的检测权。

Direct to consumer genetic testing and the libertarian right to test.

机构信息

School of Law and Justice , Faculty of Business Government and Law, University of Canberra, Australian Capital Territory, Australia.

出版信息

J Med Ethics. 2018 Nov;44(11):787-789. doi: 10.1136/medethics-2016-103778. Epub 2017 Aug 20.

DOI:10.1136/medethics-2016-103778
PMID:28824006
Abstract

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)- independent of autonomy or utility-reflecting Cohen's work on self-ownership and Hohfeld's model of jural relations. Cohen's model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include 'conflict with other people's rights', 'aggressive' use of the genome and 'harming others'. Harms potentially experienced by relatives as a result of the individual's exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving 'aggressive' use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

摘要

洛伊最近提出了一种自由的权利,即直接面向消费者的基因检测(DTCGT)-独立于自主性或效用-反映了科恩的自我所有权和霍菲尔德的法律关系模式的工作。科恩的自由意志主义模式主要涉及身体的自我所有权。尽管洛伊充分考虑了 DNA 的物理性质,但 DNA 也是一种信息基质,在家庭内部高度保守。无需直接接触他们个人基因组的物理副本,就可以推断出接受测试者的亲属的基因组信息,从而触发亲属的权利和利益,这些权利和利益可能与其他人的权利和利益不同,即个体消费者、测试提供者和监管者。洛伊认为,对行使权利的监管干预需要正当理由,而行使权利的表面理由并不需要。监管干预的正当理由可以包括“与他人权利冲突”、“基因组的攻击性使用”和“伤害他人”。由于个人行使测试权利而潜在地使亲属遭受的伤害包括侵犯遗传隐私、侵犯他们决定何时以及是否进行基因测试的权利和歧视。如果这些伤害得到承认,这些伤害可能证明监管干预是合理的;驱动“基因组的攻击性使用”的动机也可能是相关的。上述每一个标准都需要澄清,因为它们之间存在潜在的冗余和紧张关系,不同的含义会影响不同的权利持有者群体。

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