Biotechnology – “We ask about the risks”

Ms. Bartram, you weren’t there at the time, but how did the gene-ethical network come about?

The gene-ethical network was founded in 1986. It was a time when a lot happened in terms of biotechnology, reproduction technology, genetic engineering. It was researched to change and release plants. In the area of ​​reproductive technologies, for example, new prenatal diagnostic methods have been further developed. For society and also left -wing movements, it was difficult to understand what happens from a technical point of view and what potentially harmful effects that can have. There was a desire to translate and spread information in order to finally have a say and have a say. That is why the Gen-ethical network association was then founded-by people from the ecological spectrum, feminists and the right of disability.

How did you get the network?

I studied biology and at the same time I was involved in queer feminist contexts. At first I didn’t think that together. Then there was a point where I came into contact with people who have critically dealt with racism in the life sciences. At that time there was a biology professor at the Humboldt University who said there were human breeds. In contrast, an initiative of students was founded.

When was that?

2005. After my studies, I did his doctorate at the Charité, in cancer research, and worked with cell lines in the laboratory. However, I noticed that I don’t want to work in the way the science system works. In my impression, it was less about the quality of research and whether therapies are being developed that help people. But it was primarily about publications, CVs and how often someone is cited. I lacked the motivation to continue working. That’s why I thought about how I can critically deal with this topic and found the gene-ethical network. First I worked on a voluntary basis and then I got a job in the medical area there.

How is the relationship between volunteering and paid cooperation in the network?

The board and advisory board are on a voluntary basis. These are people who have been connected to the club for a very long time and bring their professional expertise. The people who work in the office are all paid. Formerly very precarious; Last year we had to give ourselves a salary increase, simply because it was not enough. Compared to what I would earn in science, it is still very little. We do the work because we are really concerned with the content and not about making money.

In recent years, a lot has been happening in molecular biological research. You are definitely busy staying about the development.

We have a person for agricultural issues and two people who deal with medical topics. In the agricultural area there are also other organizations that work on genetic engineering, but with many medical topics we are the only ones. We look at the studies long before the content is on the political agenda. We pursue the developments from initial ideas from science to application ideas and technology development. Political decisions, for example what the health insurance company pays, only come much later. It is about questions that touch the core of society, for example the topic of genome editing. Science discusses whether human embryos should be genetically changed. This would lead to genetically modified children on the grounds that they could prevent certain diseases or disabilities.

Is that already done?

There was an attempt by a Chinese scientist from which genetically changed children emerged; That was a scandal. But there are also scientists who want to continue similar in supposedly serious studies. So far there have been no clinical studies, but we are trying to intervene beforehand. We ask why something should be done at all and what the risks are.

The so -called gene scissors crispr/CAS is used for genome editing. Is it as precise as always claimed?

No. At the EU level, there is currently no discussion about regulating genome editing in agriculture because it is so precise to abolish risk testing and labeling. But it is actually clear in the medical area that the technology is not so precise. Many studies show that very many non -wanted effects arise.

There are first approved therapies against rare and serious diseases that contain genome editing. Are risks in such cases rather accepted because the diseases are so serious?

I think we always have to argue precisely and differently and do not generally make science bad. It is not the case that I am against genetic engineering. I only think if changed organisms are released in ecosystems and can no longer be brought back, you have to be more careful than with limited applications. In the case of serious illnesses for which there are no other good therapies, you can think about such approaches if people are informed about the risks. However, they are incredibly expensive therapies. My criticisms would rather be: why are they so expensive? What about distribution justice?

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What are the topics of information in public?

In a project funded by the Federal Ministry of Education and Research, it is currently being considered to sequence the genomes of all newborns in Germany and possibly store the data for further research. The whole thing is in the context of worldwide similar projects. With newborn screenings, you can already search for a few serious illnesses to treat them even before the symptoms use. The idea is that you could potentially test hundreds or thousands of illnesses. Some think it could also help with family planning if the parents already know that certain genetic diseases can occur in the next child. There are completely new ethical questions and the public would actually have to say a lot more. An emerging national DNA database could also arouse desires, for example with investigative authorities.

Is there a search for alleged crime genes to fear again?

At least you have to think of it. Research on the inheritance of behavior and personality cannot be killed. In the meantime you have overall genehenine with a lot more data. There are no longer only individual gene variants are correlated with properties, but many millions of gene variants. That is something that should also deal with left -wing movements. Our task as a gene-ethical network is to make these things visible.

Which channels do you use for this?

Our central medium is our magazine »Gid«. Since, like everywhere, the need for print media decreases, we also put everything online. But on the one hand we want to spread information, on the other hand we have to live on something. We got through politically independently well for 40 years. We live primarily on donations, membership fees and subscription contributions. But the competition for donations has increased and the willingness to donate decreases overall. With a rescue call we were able to stuff the worst hole. But we still need continuous support.