How can art enrich the debate around genetic privacy?

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En provenance du cours de Universiteit Leiden

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

9 notes

Universiteit Leiden

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

9 notes

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.

À partir de la leçon

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

Rencontrer les enseignants

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

Public debates about the issue of genetic privacy is often dominated

by scientists and policymakers who expressed their opinion ineffectual way.

However, there are many more implicit and more

emotional factors that are of influence on how people form their opinion.

Think for instance of cultural biases,

or fears, hopes, or expectations.

These factors are often obscured in

public debate remaining hidden factors in discussions.

Artworks, culture objects, and

cultural phenomena could express these underlying emotions as assumptions.

The science fiction movie Gattaca, from 1997,

expresses the fear the DNA profiling could

eventually fully determine the opportunities we get in society,

and other art forms such as sculptures and

performances can express these hidden sentiments as well.

Arts and culture can thereby function as an alternative voice in ethical debates,

wanted foregrounds, underlying emotions and assumptions.

But, how does art foregrounds this hidden motives?

This happens by presenting a certain ambiguity namely,

art can show us difference and sometimes opposing

viewpoints but which it explores developments and their implications,

and thereby activates our fears,

hopes and our expectations.

It confronts us with the complexity of the issue at stake.

By art it is capable of making

tangible the ambivalence that often surrounds these issues,

and in its own unique way art does not give definite answers but it

allows us to experience the possible implications of certain techniques.

Some artworks that allow for this to happen are made by so-called bio-artists.

Bio-artists work in a lab with living materials such as cells and genes,

they do so to investigate practices and media used in life sciences.

In their experimental art projects bio-artists explore the legal,

ethical, and societal implications of biotechnologies.

For instance, an artist with works of wide technologies is Heather Dewey-Hagborg,

she works in the edge of genetic research.

For one of her works she has played with the possibilities

for facial reconstruction on the basis of DNA material.

This technique already has been mostly employed in

actual forensic research by taking DNA from a crime scene,

investigators are able to develop

a facial reconstruction based on this genetic material and

this allows the police to track down a suspect with

better chances of solving the crime in a shorter amount of time.

For a work stranger visions,

Dewey-Hegbourg actually used the technique for creating these physical reconstructions.

First, she collected material from the streets of New York, some hairs,

chewed gum and cigarette butts,

then she extracted DNA from them and analyzed it using a computer program.

Lastly, she generated 3D printed sculptures

on how these individuals might look like based on their DNA.

And exactly these portraits have been exhibited in many gallery spaces.

What this shows us is how easy it is to

apply techniques available for facial reconstruction.

At first, one can see this as an improvement in criminal investigations,

criminals could be caught much easier now.

But, Dewey-Hagbourg, applies this technique to

random citizens that unwittingly left behind their genetic information,

and these citizens are no suspect whatsoever.

And this confronts us with the possible consequences of using this genetic technology,

it shows us the thin line between

national security and a violation of individual privacy.

Would you want a portrait based on your genetic data to be out in the open?

Should institutions be able to create facial reconstructions of innocent citizens?

And do you think that this could violates ones genetic privacy?

Well, think about this for more and check out

more information about other bio-artists and the course materials as well.

So to conclude, we have seen that arts and

culture can contribute to the ethical debate around genetic privacy.

It can do this by letting us experience

the ambiguity that surrounds practices of disclosing genetic information.

Can you think of an artist whose work could

provide an insight in the issue of genetic privacy?

And how do you think that this art

reflects your personal view on the concept of genetic privacy?

Try to think of these questions when studying the course material.

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