À propos de ce cours
3.3
6 notes
3 avis
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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Approx. 10 hours to complete

Recommandé : 5 weeks of study, 2-3 hours/ week...
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English

Sous-titres : English...
Globe

Cours en ligne à 100 %

Commencez dès maintenant et apprenez aux horaires qui vous conviennent.
Calendar

Dates limites flexibles

Réinitialisez les dates limites selon votre disponibilité.
Beginner Level

Niveau débutant

Clock

Approx. 10 hours to complete

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

English

Sous-titres : English...

Programme du cours : ce que vous apprendrez dans ce cours

Week
1
Clock
3 heures pour terminer

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 vidéos (Total 12 min), 9 lectures, 1 quiz
Video3 vidéos
Course Introduction3 min
Genetic data: Practices of disclosure7 min
Reading9 lectures
Course Overview10 min
Meet the instructors & the team5 min
Welcome to Leiden University5 min
Community Guidelines & Academic Toolkit10 min
Complete our short survey10 min
Sources and video material30 min
How do you extract DNA?5 min
Download your Learning journal3 min
Learning journal - Step 120 min
Quiz1 exercice pour s'entraîner
What do you think about genetic privacy?30 min
Week
2
Clock
2 heures pour terminer

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 vidéos (Total 7 min), 3 lectures
Video2 vidéos
What is genetic privacy?5 min
Reading3 lectures
Interview with George Church10 min
Sources and video material30 min
Learning journal - Step 230 min
Week
3
Clock
3 heures pour terminer

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 vidéos (Total 12 min), 4 lectures
Video4 vidéos
How can art enrich the debate around genetic privacy?5 min
Art as a space for disruption - Intro min
Art as a space for disruption5 min
Reading4 lectures
Sources and video material30 min
Interview with bioartist Adam Zaretsky4 min
Sources and video material30 min
Learning journal - Step 330 min
Week
4
Clock
6 heures pour terminer

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 vidéos (Total 16 min), 2 lectures, 3 quiz
Video5 vidéos
Podcast CEO of Hartwig Medical Foundation4 min
Podcast Patient3 min
Podcast Mother of three3 min
Podcast Professor of digital cultures4 min
Reading2 lectures
Source and video material30 min
Learning journal - Step 4 min
Quiz1 exercice pour s'entraîner
Let's recap!30 min
3.3

Meilleurs avis

par 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.

Enseignants

Lotte Pet

Art historian and artist
Faculty of Humanities, Leiden University

Robert Zwijnenberg

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

À propos de 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....

Foire Aux Questions

  • Once you enroll for a Certificate, you’ll have access to all videos, quizzes, and programming assignments (if applicable). Peer review assignments can only be submitted and reviewed once your session has begun. If you choose to explore the course without purchasing, you may not be able to access certain assignments.

  • When you purchase a Certificate you get access to all course materials, including graded assignments. Upon completing the course, your electronic Certificate will be added to your Accomplishments page - from there, you can print your Certificate or add it to your LinkedIn profile. If you only want to read and view the course content, you can audit the course for free.

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