課程信息
3.3
6 個評分
3 個審閱
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....
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100% 在線課程

立即開始,按照自己的計劃學習。
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可靈活調整截止日期

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Beginner Level

初級

Clock

Approx. 10 hours to complete

建議:5 weeks of study, 2-3 hours/ week...
Comment Dots

English

字幕:English...
Globe

100% 在線課程

立即開始,按照自己的計劃學習。
Calendar

可靈活調整截止日期

根據您的日程表重置截止日期。
Beginner Level

初級

Clock

Approx. 10 hours to complete

建議:5 weeks of study, 2-3 hours/ week...
Comment Dots

English

字幕:English...

教學大綱 - 您將從這門課程中學到什麼

Week
1
Clock
完成時間為 3 小時

What is on Your Mind?

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. ...
Reading
3 個視頻(共 12 分鐘), 9 個閱讀材料, 1 個測驗
Video3 個視頻
Course Introduction3分鐘
Genetic data: Practices of disclosure7分鐘
Reading9 個閱讀材料
Course Overview10分鐘
Meet the instructors & the team5分鐘
Welcome to Leiden University5分鐘
Community Guidelines & Academic Toolkit10分鐘
Complete our short survey10分鐘
Sources and video material30分鐘
How do you extract DNA?5分鐘
Download your Learning journal3分鐘
Learning journal - Step 120分鐘
Quiz1 個練習
What do you think about genetic privacy?30分鐘
Week
2
Clock
完成時間為 2 小時

Open up Your Mind

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? ...
Reading
2 個視頻(共 7 分鐘), 3 個閱讀材料
Video2 個視頻
What is genetic privacy?5分鐘
Reading3 個閱讀材料
Interview with George Church10分鐘
Sources and video material30分鐘
Learning journal - Step 230分鐘
Week
3
Clock
完成時間為 3 小時

Connect your mind

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....
Reading
4 個視頻(共 12 分鐘), 4 個閱讀材料
Video4 個視頻
How can art enrich the debate around genetic privacy?5分鐘
Art as a space for disruption - Intro分鐘
Art as a space for disruption5分鐘
Reading4 個閱讀材料
Sources and video material30分鐘
Interview with bioartist Adam Zaretsky4分鐘
Sources and video material30分鐘
Learning journal - Step 330分鐘
Week
4
Clock
完成時間為 6 小時

Make up your mind

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. ...
Reading
5 個視頻(共 16 分鐘), 2 個閱讀材料, 3 個測驗
Video5 個視頻
Podcast CEO of Hartwig Medical Foundation4分鐘
Podcast Patient3分鐘
Podcast Mother of three3分鐘
Podcast Professor of digital cultures4分鐘
Reading2 個閱讀材料
Source and video material30分鐘
Learning journal - Step 4分鐘
Quiz1 個練習
Let's recap!30分鐘
3.3

熱門審閱

創建者 RHMay 22nd 2018

Great information on a topic that I have never really given much attention to. Great instructor and the course is well laid out. Strongly recommended.

講師

Lotte Pet

Art historian and artist
Faculty of Humanities, Leiden University

Robert Zwijnenberg

Professor of Art and Science Interactions
Faculty of Humanities, Leiden University

關於 Universiteit Leiden

Leiden University is one of Europe's foremost research universities. This prominent position gives our graduates a leading edge in applying for academic posts and for functions outside academia. Leiden University is the oldest university in the Netherlands. It was founded in February 1575, as a gift from William of Orange to the citizens of Leiden after they had withstood a long siege by the Spanish. Our motto is: Praesidium Libertatis — Bastion of Liberty....

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