Art as a space for disruption

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Do curso por Universiteit Leiden

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

7 classificações

Universiteit Leiden

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

7 classificações

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.

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Connect your mind

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.

How can art enrich the debate around genetic privacy? - Intro0:51

How can art enrich the debate around genetic privacy?5:08

Art as a space for disruption - Intro0:36

Art as a space for disruption5:35

Conheça os instrutores

Lotte Pet
Art historian and artist
Faculty of Humanities, Leiden University
Robert Zwijnenberg
Professor of Art and Science Interactions
Faculty of Humanities, Leiden University

In the past couple of years,

many biotechnological fantasies have become reality.

An increasing amount of companies have emerged,

that have begun to implement technologies dedicated

to the publication and interpretation of genetic data.

In the beginning of 2018,

the MinION device was launched.

This is a device that looks like a small USB stick.

If you put a DNA sample in it,

the device can sequence a large part of your genes in only two hours,

and the cost for this are less than 1,000 euros.

This makes it possible to reach our genetic profile extremely quickly and inexpensively.

Another example is the company Parabon NanoLabs.

This company actually launched a surface for

creating facial reconstructions based on DNA material,

found at a crime scene.

The surface already collaborates with several police departments,

in the U.S. and a similar surface identitas has emerged in Canada.

Remember that artistic capacity to reflect on the implications of these techniques.

It can do this by speculating about

the future steps such developments might bring forwards.

It speaks to our emotions and our expectations,

but some artists or Bioartists,

actually use these new technologies for public empowerment.

They organize do-it-yourself workshops,

in which people can learn to experiment with various bio-technologies.

Bioart therefore, makes these techniques available for citizens.

It allows them to become familiar with

existing techniques and knowledge in the field of genetic research.

So Biart therefore, invites laymen to participate in science.

It enables them to develop informed opinions, and in this way,

Bioarts allows new public sewer rise in the discourse around genetic research.

These publics do not belong to the dominant voices in a debate,

like scientists or policymakers.

They are alternative voices,

often excluded from mainstream debates.

Bioart does not only educate people,

it also provides them with a platform to protect

themselves from certain implementations of genetic technologies.

Bioartists often develop workshops that equip people with tools,

for using existing technologies in an alternative way,

and sometimes even in a way that actively disrupts

the practices of large companies dealing with the new genetic techniques.

These techniques are ethically ambiguous,

and seem to threaten the privacy and autonomy of individual citizens.

By giving rise in alternative practice of available technologies,

Bioarts enables people to subvert existing regimes of authority, and official narratives.

One of projects that plays with subversion of practices of biological surveillance,

is DNA immunity censor by Stijn Belle.

This art project obliterates the link between one's DNA and one's physical presence.

Belle, secretly spreads the DNA material of people,

leaving it behind it places where they've never been.

For this, he uses a so-called DNA canon,

In which he inserts an individual's genetic material,

and then shoots the canon,

so all the DNA gets spread around.

This way, the notion of DNA material that provides

irrefutable evidence for someone's presence at a certain place, becomes disrupted.

Another art project that allows people to disrupt

existing practices of genetic technologies is by anonymous,

by Heather do we Hagberg.

By anonymous is a community platform that brings together artists,

activists, and citizens that are concerned with genetic privacy.

Through an online discussion forum,

they discuss what to do with new technological developments,

that allow institutions to gather and use your DNA,

and they discuss what to do with this new form of surveillance.

Next to this, the platform shares diverse manuals and supplies for replacing,

extracting, and raising your own DNA.

In this way, by anonymous provides people with

the knowledge and tools to remain biologically anonymous.

It creates a space for the disruption of

the actual implementations of genetic technologies.

So, art can further enriched to ethical debates around genetic privacy,

as it allows new publics to arise.

Bioart creates a space for the publics to subvert

practices and that's collecting and interpreting their genetic information.

Bioart thereby, enable citizens to stand up

against possibly suppressing ways in which new genetic technologies are used.

So consider, would you participate in a bio arc projects?

And do you think laymen should be included

in the debates around genetic research and privacy?

Think about these questions,

before continuing with the rest of the course.

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