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Ethical challenges of precision cancer medicine
Seminars in Cancer Biology ( IF 12.1 ) Pub Date : 2020-10-09 , DOI: 10.1016/j.semcancer.2020.09.009
Eva Caroline Winkler 1 , Bartha Maria Knoppers 2
Affiliation  

Amongst common diseases, cancer is often both a leader in self-regulatory policy, or the field for contentious ethical issues such as the patenting of the BRCA1/2 genes. With the advent of genomic sequencing technologies, achieving precision cancer medicine requires prospective norms due to the large and varied sources of data involved. Here, we discuss the ethical and legal aspects of the policy debate around the relevant topics in precision cancer medicine: the return of incidental findings and sequencing raw data to patients, the communication of genetic results to patients’ relatives, privacy and communication risks with concomitant oversight strategies, patient participation and consent models. We present the arguments and empirical data supporting specific policy solutions delineating still contested areas. What type of consent and oversight are required to acquire genomic data or to access it where desired, either by the participant/patient or third-party researchers? Most of the raw sequencing data is still uninterpretable and the variants revealed subject to reinterpretation over time. No doubt the ethical challenges of precision cancer medicine are a prototype of what’s to come for other diseases. They are also paradigmatic for regulatory and ethical questions of the translational endeavors since the two worlds – basic science and patient care – are governed by different ethical and legal principles that need to be reconciled in precision cancer medicine.



中文翻译:

精准癌症医学的伦理挑战

在常见疾病中,癌症通常既是自我监管政策的领导者,又是有争议的伦理问题领域,例如 BRCA1/2 基因的专利。随着基因组测序技术的出现,由于所涉及的数据来源广泛且多样,实现精准癌症医学需要前瞻性规范。在这里,我们讨论了围绕精准癌症医学相关主题的政策辩论的伦理和法律方面:将偶然发现和测序原始数据返回给患者、将基因结果传达给患者亲属、隐私和伴随的沟通风险监督策略、患者参与和同意模型。我们提出了支持具体政策解决方案的论点和经验数据,这些解决方案划定了仍有争议的领域。参与者/患者或第三方研究人员获取基因组数据或在需要时访问它需要什么类型的同意和监督?大多数原始测序数据仍然无法解释,并且随着时间的推移,所揭示的变体可能会被重新解释。毫无疑问,精准癌症医学的伦理挑战是其他疾病即将发生的事情的原型。它们也是转化努力的监管和伦理问题的典范,因为这两个世界——基础科学和患者护理——受不同的伦理和法律原则支配,需要在精准癌症医学中加以协调。由参与者/患者还是第三方研究人员?大多数原始测序数据仍然无法解释,并且随着时间的推移,所揭示的变体可能会被重新解释。毫无疑问,精准癌症医学的伦理挑战是其他疾病即将发生的事情的原型。它们也是转化努力的监管和伦理问题的典范,因为这两个世界——基础科学和患者护理——受不同的伦理和法律原则支配,需要在精准癌症医学中加以协调。由参与者/患者还是第三方研究人员?大多数原始测序数据仍然无法解释,并且随着时间的推移,所揭示的变体可能会被重新解释。毫无疑问,精准癌症医学的伦理挑战是其他疾病即将发生的事情的原型。它们也是转化努力的监管和伦理问题的典范,因为这两个世界——基础科学和患者护理——受不同的伦理和法律原则支配,需要在精准癌症医学中加以协调。

更新日期:2020-10-09
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