在英格兰国民保健署基因组医学服务中，公众对共享基因组数据的态度进行了审议研究。
A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England.
机构信息
The University of Manchester, UK.
Sheffield Children's NHS Foundation Trust, UK.
出版信息
Public Underst Sci. 2020 Oct;29(7):702-717. doi: 10.1177/0963662520942132. Epub 2020 Jul 15.
Abstract
Whole genome (DNA) sequencing is becoming part of routine care healthcare in England. Genomic data are most useful when pooled with other patients' data, meaning that clinicians may need to share data to effectively treat patients. We ran deliberative focus groups to explore views among 44 patients and members of the public about proposals for wider genomic data sharing for clinical care. Participants were briefed about genomic medicine and engaged in group and individual exercises to deliberate on the benefits and risks of using genomic data. Findings showed that participants supported wider sharing of genomic data within health services and naturally linked care and research activities. Nonetheless, they were concerned about managing flows of information to protect patient confidentiality and guard against unauthorised uses, now and over the long-term. Ongoing conversations with the public are needed to determine appropriate uses of genomic data and safeguards to inform service development.
摘要
全基因组（DNA）测序正在成为英国常规医疗保健的一部分。当与其他患者的数据一起使用时，基因组数据最有用，这意味着临床医生可能需要共享数据才能有效地治疗患者。我们进行了深思熟虑的焦点小组讨论，以探索 44 名患者和公众对更广泛的基因组数据共享用于临床护理的建议的看法。参与者简要了解了基因组医学，并参与了小组和个人练习，以审议使用基因组数据的好处和风险。研究结果表明，参与者支持在卫生服务机构内部以及自然联系的护理和研究活动中更广泛地共享基因组数据。尽管如此，他们还是担心管理信息流以保护患者的机密性，并防范现在和长期内的未经授权的使用。需要与公众进行持续对话，以确定基因组数据的适当用途和保障措施，为服务开发提供信息。
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