Mind of the Universe - Genetic Privacy: should we be concerned?

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课程主页: https://www.coursera.org/archive/mind-of-the-universe-genetic-privacy

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Universiteit Leiden

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Should all our genetic information be made public in order to eradicate genetic diseases from this world? Who owns your genetic data once it becomes publicly accessible? What is your responsibility to family members when you know more about genetic diseases than they do? Who decides what kind of genetic information is relevant to a person? And what does genetic privacy mean to you? In this challenge with Robert Zwijnenberg (Professor in Art and Science Interactions) you will critically reflect upon the issue of genetic privacy. You will dive into the ethical questions that come up with the disclosure of genetic data in biobanks and through genetic tests. This course encourages you to think about the cultural, philosophical and political tensions present in the debate around genetic privacy. You are invited to identify and listen to the viewpoints and values provided by the different stakeholders that shape this debate: corporations, researchers, consumers and patients. Furthermore, you will go off the beaten track by exploring the issue from the unique perspective of art and culture. After a lot of thinking, supplementing, deleting and adjusting, you will be asked to share a recommendation on how to regulate practices of disclosing genetic information, while taking into consideration the concept of genetic privacy. Your advice could serve as an eye-opener for policy makers! This online learning experience is a spin-off of The Mind of the Universe documentary series created by the Dutch broadcasting company VPRO and professor Robbert Dijkgraaf, Princeton University. A number of universities in the Netherlands have used the open source material of the documentary series as a starting point to create similar experiences.

宇宙之心-基因隐私:我们应该关注吗?:是否应该公开我们所有的遗传信息,以便根除这个世界上的遗传疾病? 一旦公开获得您的遗传数据,谁拥有?当您对遗传疾病的了解多于家庭成员时,您对家庭成员有什么责任?谁决定哪种遗传信息与人相关?遗传隐私对您意味着什么? 在与Robert Zwijnenberg(艺术与科学互动教授)的挑战中,您将批判性地思考基因隐私问题。您将深入探讨与生物库中的遗传数据公开有关的伦理问题,并通过遗传测试。本课程鼓励您考虑有关遗传隐私的辩论中存在的文化,哲学和政治紧张局势。邀请您确定并聆听构成这场辩论的不同利益相关者(公司,研究人员,消费者和患者)提供的观点和价值观。此外,您将从艺术和文化的独特视角探索这一问题,从而摆脱困境。经过大量的思考,补充,删除和调整,您将被要求分享有关如何规范遗传信息公开实践的建议,同时考虑到遗传隐私的概念。您的建议可以使决策者大开眼界! 这种在线学习经验是由荷兰广播公司VPRO和普林斯顿大学教授Robbert Dijkgraaf共同创作的《宇宙心灵》纪录片系列的副产品。荷兰的许多大学都以纪录片系列的开源材料为起点,以创造类似的体验。

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