In a joint project, scientists led by biology education specialist Corinna Hößle are investigating what pupils know about genome editing and how they evaluate it ethically. The researchers want to sensitise adolescents and their teachers to the topic.
It only took a lengthy infusion to introduce certain molecules, known as gene scissors, into the blood of a 44-year-old American last autumn. These were intended to eliminate a faulty gene in his liver cells that triggers a serious hereditary disease. The patient was the first person ever to receive such gene therapy directly in his body.
The outcome of this specific intervention is still uncertain. However, it is in line with the trend: scientists and doctors are able to intervene in the genetic material of living organisms with increasing precision with the help of so-called genome editing. They hope to be able to cure hereditary diseases, HIV or cancer in the future using this fast and inexpensive method. But how safe is this technology? And what ethical questions does it raise?
Young people in particular should consider these questions, says Oldenburg biology lecturer Prof Dr Corinna Hößle. After all, they are the ones who will have to deal with this method in the future. "So we should prepare them for it, including from an ethical perspective," she adds. This is precisely the aim of a joint project led by Hößle, in which scientists are asking pupils and students about their views and want to teach them ethical and moral skills in the long term. In the project "Ethical evaluation competence and everyday fantasies of young people and students on the possibilities of genome editing", the Oldenburg team is working together with scientists and doctors from the University of Hamburg and Hannover Medical School (MHH).
Ethically problematic
The method of genome editing has developed rapidly since 2012: Back then, scientists discovered the so-called CRISPR/Cas complex in bacteria. It is now possible to use this molecule complex to specifically cut out individual genes or larger parts of the genetic material in certain cells of an organism and, if necessary, replace them with a healthy gene. To date, doctors have generally removed the patient's own cells and treated them outside the body. Clinical trials with cancer patients are already underway in China, and this could soon be the case in Europe too. The method becomes ethically problematic above all when it is used in so-called germ cells. This means that the genetic changes are passed on to future generations.
In the project funded by the Federal Ministry of Education and Research (BMBF), the researchers now want to find out: What do young people know about genome editing? What ethical standards do they use to evaluate the method? And would they be prepared to use it? To this end, doctoral student Laura Heinisch has developed a detailed questionnaire for pupils together with Hößle and educational scientist Prof Dr Ulrike Krause.
A preliminary study with 18 pupils from a year 11 class has already shown: The young people are open-minded about genome editing, but quite differentiated. "For example, the students thought that it should be decided on a case-by-case basis when the method should be used," explains Heinisch. However, the students found it difficult to adopt a perspective other than their own and to assess the consequences. They were also often unable to explicitly name ethical values such as human dignity or well-being - but these were implicit in their views.
Realistic scenario
What's more, most students and even teachers are not aware of how genome editing actually works, says Dr Wiebke Rathje, who is coordinating the joint project. "It often takes up to ten years for new scientific findings to be incorporated into school lessons." Heinisch can therefore not assume any specialised knowledge when she interviews pupils as part of the main study on genome editing. She has therefore developed a concept for two 90-minute teaching units. In these, she not only teaches the scientific basics, but also the ethical aspects: For example, does the fact that the technology works with viruses harbour any dangers? Or: Is it ethically justifiable to make genetic modifications for cosmetic reasons?
Heinisch is now teaching around 80 pupils from an 11th year secondary school in Varel in this way. The young people have to answer her questionnaire once before and, in a modified form, once after the lessons. In this way, the doctoral student finds out what specialist knowledge and judgement skills the pupils have acquired in class.
The questionnaire initially confronts the young test subjects with a dilemma: should a couple whose child has a predisposition to leukaemia decide to treat the child with genome editing? This is a very realistic scenario that experts from the MHH have designed for their colleagues in Oldenburg. The students' task will be to independently assess the situation - for example, what moral relevance the case has and what the possible consequences are - and justify their judgement. The young people will also indicate whether they are particularly interested in biology or politics, for example, and whether they are religious.
Responsible behaviour
At the end of the project, the scientists will not only have gained an impression of how well pupils can assess bioethical issues. The researchers also want to pass on their findings to teachers as teaching materials. According to Heinisch, it is important to run through the study in different variations: In one class she will only teach specialised knowledge, in another the basics for ethical evaluation. A third class will learn both and a fourth, the control group, will receive no separate lessons. "This will allow us to see whether the concept is good or whether we need to improve the lesson," explains the doctoral student.
Even though bioethical topics have been part of the curriculum at secondary schools for several years now, ethics expert Hößle knows from previous studies that teachers often do not know exactly how to teach ethical skills. In many cases, they also felt unsure about making their own judgements. This can result in them avoiding such topics and marking pupils in class. "Using the materials we have developed, we want to encourage both experienced and trainee teachers to integrate bioethical topics into their lessons and promote ethical judgement skills - not only because they are obliged to do so, but also to promote the responsible use of new technologies," says Hößle.