genetic privacy: should we be concerned?

Leiden University challenge

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?

These are questions that you will reflect upon in this online learning experience with Robert Zwijnenberg (Professor of Art and Science Interactions at Leiden University). 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 stakeholders that shape this debate: corporations, researchers, consumers and patients and 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!

Commitment: 4-5 weeks of study, 1-2 hours per week > more information