Small World, Big World brings science and society together

New scientific developments, such as gene therapy, have the potential to transform lives. But what do these innovations mean for society and for the people they are designed to help? And how can we ensure that science is developed not only for people, but also with them? These questions inspired Small World, Big World, an interactive art installation presented last week at the Utrecht School of the Arts (HKU).

Small World, Big World invites visitors to experience how decisions made in scientific research can shape the life of a child living with a metabolic disorder. The installation reminds us that behind every treatment is not just a DNA sequence or a research result, but a real person with a unique story.

The art experience was created by artist Skyler van Delft (HKU) in collaboration with PhD researcher Eveline Ilcken, bioethicist Manon van Daal (UMC Utrecht), and writer Ida Hondelink. Their aim is not only to explain gene therapy, but to encourage meaningful conversations between science and society.

Research question became artwork

Eveline's PhD research focuses on gene therapy for children with metabolic disorders, serious diseases caused by changes in DNA that can lead to severe illness from an early age. Together with a multidisciplinary team led by Professor Sabine Fuchs at the Regenerative Medicine Center Utrecht (UMC Utrecht), she is working to develop therapies that can correct these genetic changes.

It feels strange to develop gene therapies for people without involving them in the process

As her research progressed, Eveline realized that some questions cannot be answered by scientists alone. Which disease should be treated first? Who gets to decide? And how can we ensure that new therapies truly reflect what patients need? "Ethical questions concern society as a whole," she explains. "It feels strange to develop gene therapies for people without involving them in the process."

Together with Manon, she began looking for new ways to involve people inthese conversations, not only children living with metabolic disorders, but also other children and adults. Art proved to be a powerful way to start that dialogue. Through HKU they connected with artist Skyler van Delft.

A dollhouse full of decisions

In Small World, Big World, visitors literally step into someone else's shoes. At the center of the installation stands a dollhouse. One visitor experiences life through the eyes of Manu, a girl of almost eight years old who lives with a metabolic disorder. Listening to her story through headphones, the visitor makes decisions from Manu's perspective.

Around the dollhouse sit other visitors, taking on the role of researchers. Facing away from the "child," they play a computer game in which they make decisions about scientific research. Those decisions directly influence how Manu's story unfolds. "I wanted people to really feel something," says Skyler.

Visitors were deeply moved

The installation achieved exactly that. As visitors played, they discovered that the choices they made had real consequences for Manu's life. "People left the experience thinking, 'Wow…'," Skyler recalls. " You could actually see the moment they realized how everything is connected."

Eveline also noticed how naturally the installation sparked conversations. People approached her with questions such as, "How do you normally involve patients in research?" She says, "That was exactly what we had hoped for."

To create Manu's story, Eveline and Skyler spoke with the Children's Council of the Wilhelmina Children's Hospital (WKZ), a group of children who live with illness and regularly visit the hospital. Their experiences and ideas became an integral part of the artwork. As Eveline explains, "You only discover what truly matters to children's lives by talking to them."

Both Eveline and Skyler are delighted with the response. They believe art can make complex scientific and ethical issues tangible and accessible. "When people find a topic difficult or when it becomes polarized, that's exactly when we need to talk to one another. This is one way of making that possible", says Eveline.

Experience it yourself

The first presentation of Small World, Big World served as a pilot to explore how visitors responded and how the installation could continue to evolve. The pilot proved highly successful, earning Skyler an HKU Award nomination for one of the year's most outstanding graduation projects. Eveline and Skyler will continue to present the installation at several events as part of the anniversary programme of Utrecht University and UMC Utrecht.

You can experience Small World, Big World yourself during the Weekend of Science on 3 and 4 October at the University Museum Utrecht (in Dutch).