DIY clinic provides better understanding of ethical issues

Case

DIY clinic provides better understanding of ethical issues

Robert Zwijnenberg examines the moral issues relating to medical biotechnology

Medical biotechnology has the potential to radically change our lives, but how far do we really want to go? The partnership between researcher Rob Zwijnenberg and the Waag Society has given renewed impetus to this question, for example by actively involving the general public and artists. This partnership, made possible by NWO Creative Industry - KIEM funding, aims to encourage critical reflection and public awareness through a combination of artistic and scientific research.

Medical biotechnology has been advancing for some time. 'But things have really taken off with the recent development of the CRISPR-CAS method,' says philosopher Robert Zwijnenberg. 'It is now possible for biomedical scientists to genetically modify an embryo in the lab precisely, and relatively cheaply, by exchanging one bit of DNA with another. It's a bit like being able to replace one damaged piece of Lego with another. CRISPR allows you to switch genes on or off very precisely, using something resembling a molecular pair of scissors.'

This means that diseases that are caused by a defect in a single gene, such as Huntington's disease, could be eliminated in the future. If the defective gene that causes the disease can be replaced with a 'good' gene, the disease will no longer be transferred from one generation to the next. 'And if we can replace more than one gene, the possibilities are endless,' says the professor of Art and Science Interactions at Leiden University.

At the same time, biotechnological interventions in the human body raise some important ethical issues. 'First of all, the question arises as to how far we want go. The line between genetic modification for medical reasons and genetic modification to improve the species is blurred,' says Zwijnenberg. 'However, it is also conceivable that we will see pressure from society to genetically manipulate or abort an unborn foetus, because a sick child costs society money, or because we believe that humans should no longer need to suffer from disease. And what do we think about growing human organs in animals for transplants?'

Rob ZwijnenbergRob Zwijnenberg

It is important to reflect on such issues now, says Zwijnenberg. If we do, we may be able to halt or change the direction of certain developments that we find undesirable as a society, for example by implementing new legislation. At the same time, thinking about such issues also presents us with a challenge, because we do not yet know which form future biotechnology will take. This is even more difficult for people who are not actively involved in biotechnology.

This is one of the many reasons why Zwijnenberg is so pleased with the NWO-KIEM funding, as it makes it possible for him to work together with the Waag Society (as well as other parties involved in the ethical issues surrounding biotechnology). The Waag Society is a creative foundation based in Amsterdam that works at the interface of art, science and technology. Besides conducting its own research, the foundation gives interested members of the public the opportunity to experiment with genetic modification in its laboratory, so that they can experience a DIY enhancement clinic for themselves. Of course, participants cannot yet use their own genes, but they can use genes from bacteria, for example.

But aren't these kinds of experiments very scary? 'Well, that is exactly the intention of the project,' says Zwijnenberg, laughing. 'If only humanities researchers like me worry about the ethical issues surrounding biotechnology, we will not make much progress in the public debate and the democratic decision-making process. This is why it is such a good idea for the general public to take part and to get involved in the discussion.'

But that is not all. The Waag Society and Zwijnenberg also work together with artists who challenge people to think more about biotechnology. Their creations produce the mental space we need to be able to visualise the 'new man 2.0' or its offshoots. 'We still tend to be trapped in the traditional manner of thinking when it comes to the human body.'

Famous examples of bio-art include the plants of artist Špela Petrič that are modified with human DNA and the bicephalous zebrafish of bio-artist Adam Zaretsky. Both works of art raise the question of who we should allow to design life. Both Petrič and Zaretsky spent a considerable amount of time at the Waag Society, where they also organised workshops for the general public.

The partners are very satisfied with the collaboration, which will also be continued in the form of a joint European grant application, says Zwijnenberg. 'We reinforce one another. For example, the findings of participants in the Waag Society lab sessions help focus attention on certain theories about the ethical aspects of new technologies, or to substantiate them.' Zwijnenberg’s students also benefit from the partnership: 'For example through discussions with the artists, or by stepping into the lab themselves to make fluorescent bacteria.'

If they do receive an EU grant, similar collaborations between scientists, artists and creative organisations that work together with the general public could also arise in other countries. 'That would help us examine the ethical issues surrounding biotechnology to an even greater depth and to place these on the social agenda,' says Zwijnenberg enthusiastically.

Does this mean that he is pessimistic about the future of medical biotechnology? 'Definitely not. It can be used to do some fantastic things. However, if we want to ensure that it has a largely positive influence on our lives, we need to consider the possibly unpleasant aspects too.'