Centre for Personalised Medicine, St Anne's College, University of Oxford, Oxford, UK.
Clinical Ethics, Law and Society, University of Southampton, Southampton, UK.
New Bioeth. 2023 Mar;29(1):37-51. doi: 10.1080/20502877.2022.2060590. Epub 2022 Apr 28.
Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.
我们生成基因组数据的能力目前远远超过了我们理解其含义的能力，这就提出了如何最好地利用这些数据的挑战。本文考虑了此类数据相关工作的伦理方面，重点关注与临床护理交织在一起的研究背景。我们讨论了基因组数据的识别性质、其中固有的医疗信息，以及它们在生物家族内将人们联系在一起的方式。接着我们考虑了这对同意的意义、深思熟虑地共享基因组数据的重要性、构建有意义的发现的挑战，以及在基因组数据集的代表性不平等方面的遗留问题。我们认为，基因组数据研究的持续成功依赖于公众对该事业的信任：为了证明这种信任是合理的，我们需要确保进行强有力的监管，并就此类做法中固有的伦理问题进行广泛的参与。
