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所在平台: Coursera |
课程主页: https://www.coursera.org/learn/mind-of-the-universe-genetic-privacy
课程评论：没有评论
课程名称：宇宙的思维 - 基因隐私：我们应该担忧吗？ 课程概述：在这门课程中，我们将探索一个重要问题：为了消灭遗传疾病，所有基因信息是否都应该公开？一旦基因数据变得可公开访问，谁拥有这些数据？当你对遗传疾病的理解超过家人时，你对他们有什么责任？什么样的基因信息对个人来说是相关的？基因隐私对你意味着什么？ 通过和罗伯特·兹维宁贝格（艺术与科学互动教授）的讨论，你将对基因隐私问题进行深刻的反思。课程将引导你探索基因数据在生物样本库和基因测试中的披露所引发的伦理问题。你将被鼓励思考围绕基因隐私辩论中的文化、哲学和政治张力，倾听企业、研究人员、消费者和患者等不同利益相关者的观点与价值观。此外，课程还将从艺术和文化的独特角度探讨这一问题。最终，你将被要求提出如何规范基因信息披露实践的建议，同时考虑基因隐私的概念。这些建议可能为政策制定者提供重要的启示。 本在线学习体验是荷兰广播公司VPRO与普林斯顿大学的罗伯特·迪克拉夫教授合作制作的《宇宙的思维》纪录片系列的衍生课程，荷兰的一些大学使用该系列开的开放素材，创造出类似的学习体验。 课程大纲： 1. **你的想法是什么？** 介绍基因隐私的主题，讨论基因数据的披露及应用实践，并反思个人对这些实践的初步看法。 2. **打开你的思维** 批判性反思与基因数据相关的不同实践，例如乔治·丘奇发起的个人全基因组项目。探讨这些实践所引发的伦理问题以及个人对基因隐私的理解。 3. **连接你的思维** 从艺术和文化的视角丰富基因隐私的伦理辩论，以揭示中主流讨论中被忽视的情感和文化假设，关注艺术在基因研究话语中的新兴角色。 4. **决策** 识别参与基因数据披露和应用辩论的不同利益相关者及其价值观，探索如何在基因隐私的概念下规范数据披露实践。 5. **总结** 完成政策建议并在讨论区发布，鼓励与其他参与者分享最终见解和反思，尤其是那些参与荣誉课程的学员需分享视觉材料，如信息图或视频。 通过这门课程，学员将深入理解基因隐私的复杂性，培养批判性思维能力，并在该领域的政策制定中发挥积极作用。
Name:What is on Your Mind?
Description:In this module, we will introduce the subject of genetic privacy. In a time in which more and more genetic material and information is being stored in biobanks, research labs and private companies, the urgency to consider the concept of ‘genetic privacy’ becomes all the more pronounced. We will discuss different practices dedicated to the disclosure and application of genetic data, and we ask you to reflect on your initial stance towards these practices.
Name:Open up Your Mind
Description:This part of the course will stimulate you to reflect critically on the different types of practices that work with genetic data, among which the Personal Genome Project initiated by George Church. You will get familiar with the ethical questions that these practices could raise. Furthermore, you will be encouraged to think about what the concept of genetic privacy means to you personally. What actually is genetic privacy? And what are the borders of its definition? How can we define the border between individual autonomy and public interest? Where do you place this border yourself?
Name:Connect your mind
Description:This week we will enrich the ethical debate around genetic privacy by viewing the subject from the perspective of art and culture. We will see how artworks and cultural objects can foreground the ambiguities, emotions and (cultural) assumptions often neglected in mainstream debates around biotechnological developments. Moreover, we will explore the potential of art to allow new publics to arise in the discourse around genetic research. In this module, we would like to make you aware of how your own emotions and expectations might influence your stance on the subject. From there on, you can get to a more nuanced point of view towards the issue of genetic privacy.
Name:Make up your mind
Description:Different groups of people with sometimes opposing interests take part in the public debate around the disclosure and application of genetic data. For example, patients, consumers, researchers, corporations, or politicians. These groups, or stakeholders, bring forward diverse arguments to advocate their position. Their arguments are often formed by emotions, gut feelings and cultural values. In order to regulate the disclosure of genetic data, while taking into consideration the notion of genetic privacy, we have to identify the different stakeholders and their values present in this debate.
Name:Finalization
Description:We have come to the final phase of this course: the phase of finalization. Make sure to have completed your policy advice and to have published it on the discussion board. And for those who did the honours track, also share with us your infographic, video or other type of visual. Feel free to post some last, concluding, remarks or insights on this week's discussion board.
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.
