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Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine

机译：分子肿瘤委员会：新时代的数据医学时代的道德问题

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The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with "genomic medicine" nor with "precision medicine", but with "data medicine" (DM) (big data, data mining). The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The "transformation" of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision of care. Molecular tumor boards (MTB) are one response to these changes and are now providing better access to next-generation sequencing (NGS) and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent (IC) documents at all academic medical centers and to introduce dynamic and electronic informed consent (e-IC).
机译：现代医学的实践和发展需要大量数据，特别是在癌症领域。个性化药物的未来既不用“基因组医学”也不具有“精密药物”，而是用“数据医学”（DM）（大数据，数据采矿）。该DM的建立需要深远的变化，建立联系患者和医生的四个基本要素：BioBanks，数据库，生物信息平台和基因组平台。科学研究领域的“转型”，如遗传，生物信息学和生物统计学，进入临床专业，产生了新的护理愿景。分子肿瘤板（MTB）是对这些变化的一种反应，现在可以更好地进入下一代测序（NGS）和新的癌症治疗，对患有无法操作或转移性癌症的患者，以及通常治疗失败的人。然而，MTB面临着关键的道德挑战：维持和改善私人或公共资金支持的学术医疗中心的患者，临床医生，研究人员和行业的信任，而不是直接向私营公司提供遗传数据。我们认为，在DM的这一时代，将需要适当的现代数字通信网络来维护这种信任，并改善系统的组织和有效性。因此，需要重新考虑所有学术医疗中心的知情同意（IC）文件的形式和内容，并引入动态和电子知情同意（E-IC）。

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