基因组学时代的同意与自主性
Consent and Autonomy in the Genomics Era.
作者信息
Horton Rachel, Lucassen Anneke
机构信息
Clinical Ethics and Law at Southampton (CELS), Faculty of Medicine, University of Southampton, Centre for Cancer Immunology, Southampton General Hospital, Southampton, SO16 6YD UK.
2Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton, SO16 5YA UK.
出版信息
Curr Genet Med Rep. 2019;7(2):85-91. doi: 10.1007/s40142-019-00164-9. Epub 2019 May 2.
PURPOSE OF REVIEW
Genomic tests offer increased opportunity for diagnosis, but their outputs are often uncertain and complex; results may need to be revised and/or may not be relevant until some future time. We discuss the challenges that this presents for consent and autonomy.
RECENT FINDINGS
Popular discourse around genomic testing tends to be strongly deterministic and optimistic, yet many findings from genomic tests are uncertain or unclear. Clinical conversations need to anticipate and potentially challenge unrealistic expectations of what a genomic test can deliver in order to enhance autonomy and ensure that consent to genomic testing is valid.
SUMMARY
We conclude that 'fully informed' consent is often not possible in the context of genomic testing, but that an open-ended approach is appropriate. We consider that such broad consent can only work if located within systems or organisations that are trustworthy and that have measures in place to ensure that such open-ended agreements are not abused. We suggest that a relational concept of autonomy has benefits in encouraging focus on the networks and relationships that allow decision making to flourish.
综述目的
基因组检测为诊断提供了更多机会，但其结果往往具有不确定性且复杂；结果可能需要修正和/或在未来某个时间才会具有相关性。我们讨论了这给知情同意和自主性带来的挑战。
最新发现
围绕基因组检测的大众话语往往具有很强的确定性和乐观性，但基因组检测的许多结果是不确定或不明确的。临床交流需要预见并可能挑战对基因组检测所能提供结果的不切实际期望，以增强自主性并确保对基因组检测的同意是有效的。
总结
我们得出结论，在基因组检测的背景下，“充分知情”的同意往往是不可能的，但开放式方法是合适的。我们认为，只有在值得信赖且有措施确保此类开放式协议不被滥用的系统或组织中，这种广泛的同意才会有效。我们建议自主性的关系概念有助于鼓励关注那些能使决策蓬勃发展的网络和关系。
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