À propos de ce cours
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.
Globe

Cours en ligne à 100 %

Commencez dès maintenant et apprenez aux horaires qui vous conviennent.
Beginner Level

Niveau débutant

Clock

Approx. 11 heures pour terminer

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

English

Sous-titres : English
Globe

Cours en ligne à 100 %

Commencez dès maintenant et apprenez aux horaires qui vous conviennent.
Beginner Level

Niveau débutant

Clock

Approx. 11 heures pour terminer

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

English

Sous-titres : English

Syllabus - What you will learn from this course

1

Section
Clock
3 hours to complete

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 videos (Total 12 min), 9 readings, 1 quiz
Video3 videos
Course Introduction3m
Genetic data: Practices of disclosure7m
Reading9 readings
Course Overview10m
Meet the instructors & the team5m
Welcome to Leiden University5m
Community Guidelines & Academic Toolkit10m
Complete our short survey10m
Sources and video material30m
How do you extract DNA?5m
Download your Learning journal3m
Learning journal - Step 120m
Quiz1 practice exercises
What do you think about genetic privacy?30m

2

Section
Clock
2 hours to complete

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 videos (Total 7 min), 3 readings
Video2 videos
What is genetic privacy?5m
Reading3 readings
Interview with George Church10m
Sources and video material30m
Learning journal - Step 230m

3

Section
Clock
3 hours to complete

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 videos (Total 12 min), 4 readings
Video4 videos
How can art enrich the debate around genetic privacy?5m
Art as a space for disruption - Intro0m
Art as a space for disruption5m
Reading4 readings
Sources and video material30m
Interview with bioartist Adam Zaretsky4m
Sources and video material30m
Learning journal - Step 330m

4

Section
Clock
6 hours to complete

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 videos (Total 16 min), 2 readings, 3 quizzes
Video5 videos
Podcast CEO of Hartwig Medical Foundation4m
Podcast Patient3m
Podcast Mother of three3m
Podcast Professor of digital cultures4m
Reading2 readings
Source and video material30m
Learning journal - Step 40m
Quiz1 practice exercises
Let's recap!30m

5

Section
Clock
23 minutes to complete

Finalization

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. ...
Reading
1 video (Total 3 min), 2 readings
Reading2 readings
Check out the other Mind of the Universe Learning experiences10m
Complete our short survey10m
3.5

Top Reviews

By 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.

Instructors

Avatar

Lotte Pet

Art historian and artist
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Robert Zwijnenberg

Professor of Art and Science Interactions

About 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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