Schaefer G Owen, Tai E Shyong, Sun Shirley
Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
Saw Swee Hock School of Public Health, National University of Singapore, Singapore.
Asian Bioeth Rev. 2019 Sep 30;11(3):275-288. doi: 10.1007/s41649-019-00094-2. eCollection 2019 Sep.
As opposed to a 'one size fits all' approach, precision medicine uses relevant biological (including genetic), medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone's disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in the (Xafis et al. 2019) to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner.
与“一刀切”的方法不同，精准医学利用有关个人的相关生物（包括基因）、医学、行为和环境信息，进一步实现医疗保健的个性化。这可能意味着能更好地预测某人的疾病风险，以及在其患病时进行更有效的诊断和治疗。通过将各种不同的数据集链接在一起，以揭示迄今未知的相关性和因果途径，大数据能够实现比以往更高的精准度和个性化定制。但这也引发了一些伦理问题，涉及利益平衡、匿名化的可行性、对家庭和群体的影响以及基因歧视。本文根据公共利益、正义、伤害最小化、透明度、参与度和反思性等价值观来分析这些问题，并将（Xafis等人，2019年）中提出的审议平衡方法应用于一个临床基因组数据共享的案例研究。有关如何使用该框架的解释，请参考那篇文章，包括对所涉及关键价值观的全面解释以及案例研究结尾处使用的平衡方法。我们的讨论旨在为参与精准医学实践以及治理和监督的人员提供帮助，以便以连贯和系统的方式解决出现的伦理问题。
