How to regulate the disclosure of genetic data?
A selection of policy recommendations, created by learners of the online learning experience 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? These are some of the central questions in the online learning experience or MOOC (Massive Open Online Course), ‘Genetic privacy: Should we be concerned?’, created by Leiden University (The Netherlands), re-using and re-mixing video material from the VPRO series the Mind of the Universe.
In this online course with Prof. dr. Robert Zwijnenberg (professor in art and science interactions at Leiden University) and Lotte Pet (art historian and artist), learners from all over the world have been invited to reflect critically on the issue of genetic privacy, and on various practices working with genetic data, such as biobanks and (commercial) genetic tests. During the 5-week course the participants have gotten familiar with the ethical questions that these practices could raise, were invited to think about what genetic privacy means to them personally and reflect on viewpoints and values provided by different stakeholders that shape this debate: corporations, researchers, consumers and patients and artists. After reflections and discussions about the cultural, philosophical and political tensions present in the debate, learners were asked to create a policy advice on how to regulate practices dedicated to the disclosure of genetic data, while taking into consideration the concept of genetic privacy.
Out of the large amount of policy recommendations the teaching team has selected the most promising ones, which are published here in the VPROs hall of fame. The winning policy advices were also published in an eBook on the website of the Center for Genetics & Society and discussed in a live webinar with experts. We hope that the publication of these policy recommendations will contribute to the ongoing debate around the disclosure of genetic data and the notion of genetic privacy. We thank all the online learners throughout the world for their critical and reflective contributions and helping to foster this important debate!