Mind of the Universe - Genetic Privacy: should we be concerned?
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.
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- Level Foundation
- Duration 14 hours
- Course by Universiteit Leiden
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Offered by
About
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.Modules
Welcome to the online learning experience
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1
Videos
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5
Readings
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1
Discussion
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1
Plugin
1
Discussions
- Tell us your goals
1
Videos
- How to succeed in your online class?
5
Readings
- Course Overview
- Meet the instructors & the team
- Leiden University: Facts & Figures
- Community Guidelines
- What is your learning path?
An introduction to genetic privacy: disclosing genetic data
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3
Videos
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4
Readings
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2
Discussion
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1
Assignment
1
Assignment
- What do you think about genetic privacy?
2
Discussions
- 1. Get to know your fellow learners
- 2. Would you share your genetic information?
3
Videos
- Introduction: Why should we talk about genetic privacy?
- Course Introduction
- Genetic data: Practices of disclosure
4
Readings
- Sources and video material
- How do you extract DNA? [video]
- Download your Learning journal
- Learning journal - Step 1
How can we define genetic privacy?
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2
Videos
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3
Readings
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2
Discussion
2
Discussions
- 3. Explore the interview with George Church
- 4. Corporations, genetic technologies and ethical dilemmas
2
Videos
- Introduction: What is genetic privacy?
- What is genetic privacy?
3
Readings
- Interview with George Church [video]
- Sources and video material
- Learning journal - Step 2
Genetic privacy through the lens of art and culture
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4
Videos
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4
Readings
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3
Discussion
3
Discussions
- 5. What kind of insights in genetic privacy does art provide?
- 6. What about participating in bioart projects?
- 7. Giving and getting feedback on your policy advice
4
Videos
- How can art enrich the debate around genetic privacy? - Intro
- How can art enrich the debate around genetic privacy?
- Art as a space for disruption - Intro
- Art as a space for disruption
4
Readings
- Sources and video material
- Interview with bioartist Adam Zaretsky [video]
- Sources and video material
- Learning journal - Step 3
Bridging the gap: identifying stakeholder concerns
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5
Videos
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2
Readings
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2
Discussion
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1
PeerReview
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1
Assignment
1
Assignment
- Let's recap!
1
Peer Review
- Grade each other's policy advice!
2
Discussions
- 8 Who can decide upon practices of disclosing genetic data?
- 9. Publish your final policy advice here
5
Videos
- Stakeholder Concerns
- Podcast CEO of Hartwig Medical Foundation
- Podcast Patient
- Podcast Mother of three
- Podcast Professor of digital cultures
2
Readings
- Source and video material
- Learning journal - Step 4
Wrapping up
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2
Videos
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1
Readings
2
Videos
- How to move into a genetic future?
- Webinar Recording: Policy Recommendations
1
Readings
- Check out the other Mind of the Universe Learning experiences
Auto Summary
Explore the ethical and cultural implications of genetic privacy with Professor Robert Zwijnenberg in this engaging course tailored for health and fitness enthusiasts. Delve into the complexities surrounding public access to genetic data, its ownership, and the responsibilities towards family members. Through thought-provoking discussions, you will analyze the viewpoints of various stakeholders and consider the role of art and culture in this debate. Spanning 840 minutes, this Coursera course is part of The Mind of the Universe series and is available through both Starter and Professional subscriptions. Ideal for those at a foundational level seeking to influence policy and understand genetic privacy.
Lotte Pet
Robert Zwijnenberg