Do we need to make all of our genetic information public so that there are no genetic diseases in the world?
Once your genetic data becomes publically accessible, who owns it? How do you share your knowledge with family members about genetic diseases? Who decides which genetic information is most relevant to a person's case? What does genetic privacy even mean?
This challenge will be led by Robert Zwijnenberg (Professor of Art and Science Interactions). You will reflect critically on the topic of genetic privacy. The ethical issues surrounding the disclosure of genetic data through genetic tests and biobanks will be explored. This course will encourage you to consider the political, cultural and philosophical tensions that are present in the debate about genetic privacy. Listen to and identify the perspectives and values of the various stakeholders in this debate, including consumers, researchers, patients, and consumers. You will also explore the topic from the unique perspective art and culture. After much thought, supplementing, deleting, and adjusting, you will be asked for a recommendation about how to regulate genetic information disclosure practices, taking into account the notion of genetic privacy. Your suggestions could be a great help to policymakers!
This online learning experience is a spinoff of The Mind of the Universe documentary show created by VPRO, a Dutch broadcasting company, and Robbert Dijkgraaf from Princeton University. Many universities in the Netherlands have used open-source material from the documentary series to create similar experiences.
