Universiteit Leiden
Mind of the Universe - Genetic Privacy: should we be concerned?
Universiteit Leiden

Mind of the Universe - Genetic Privacy: should we be concerned?

Taught in English

Some content may not be translated

3,531 already enrolled


Gain insight into a topic and learn the fundamentals

Lotte Pet
Robert Zwijnenberg

Instructors: Lotte Pet


(16 reviews)

Beginner level
No prior experience required
13 hours to complete
3 weeks at 4 hours a week
Flexible schedule
Learn at your own pace

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There are 5 modules in this course

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.

What's included

4 videos9 readings1 quiz3 discussion prompts1 plugin

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?

What's included

2 videos3 readings2 discussion prompts

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.

What's included

4 videos4 readings3 discussion prompts

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.

What's included

5 videos2 readings1 quiz1 peer review2 discussion prompts

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.

What's included

2 videos1 reading


Lotte Pet
Universiteit Leiden
1 Course3,531 learners
Robert Zwijnenberg
Universiteit Leiden
1 Course3,531 learners

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Reviewed on May 21, 2018


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