Too much of a risk?

Recently, Coburg University held an international conference on bioethics. We took the opportunity to ask the researchers Prof. Dr. Kevin FitzGerald, Prof. Dr. James Giordano and Prof. Dr. Niko Kohls about the risks of human gene manipulation.

Not long ago, the Chinese researcher He Jiankui from Shenzhen University claimed to have genetically altered two new born girls during their embryonic development. Why did this case lead to outrage among ethicists?

Prof. FitzGerald: Because this is not a success! In the United States in December 2015 researchers from Europe, North America and China got together to talk about whether or not this technology should be used on human beings. And the decision at that time was: No! Because yes, you may change the gene you try to change. But you may also change other genes that you’re not trying to change. And that could be very harmful. So there is the possibility that the treatment that should help you, will also hurt you. What happened in China violated those and other problems. The risk they put the children under was greater than the benefit they got.

So you think that it is still too early for this technology?

Prof. FitzGerald: It was too early for two reasons. One, we had come to learn that the technology, although better than anything else we have ever had, still can have some unpredictable consequences. And even if the target is achieved, you get other results that are called “off-target-results”, which can be harmful. So until we have achieved a better understanding of how to control or prevent those off-target-results – even if you could do the good target – you shouldn’t do it to human beings. The second thing is: Even if you could do it perfectly – Should you do it? Because now you will be changing not only that person but all of his or her children, and their children and grand grandchildren… So the question is: Do we want to intentionally change our future human beings?

Every medical therapy is accompanied by opportunities and risks. Should parents be allowed to decide for their unborn children if their genes are being manipulated?

Prof. FitzGerald: This is an extremely important question for two reasons. First because Dr. He Jiankui used the idea that these parents wanted this as justification for doing something that – I think everybody else will agree – was not right. Should parent’s decisions and desires be important in the overall decision making process? Absolutely! Should they be able to determine everything? No! Because someone needs to be there to say: “No, don’t do that. That’s a bad decision!” And there are medical and ethical standards and even societal standards. I don’t think we have that balance yet between the individual needs and desires and also the community goods. One of the things I think this technology will do is to force us having this discussion: How do we achieve that balance?

Prof. Giordano: For the next generation the genetic possibilities will be reality. Therefore, we have to discuss these ethical questions during our studies. Because today’s students are the decision-makers of tomorrow. In the ethical discussion we have to consider ecological, economic, social, international and legal factors.

Prof. Kohls: I’m very keen to get international researchers to Coburg University to discuss these ethical issues together with our students. We do not yet have an ethic of health promotion. Here we have to sensitize our students, too.

Prof. Dr. Kevin FitzGerald, SJ, teaches at Creighton University in Omaha, Nebraska. He holds a doctorate in molecular genetics and bioethics and advises the Vatican on bioethics issues. Prof. Dr. James Giordano teaches at Georgetown University, Washington DC, at the Department of Neurology and Biochemistry. He is a visiting professor of Coburg University. Prof. Dr. Niko Kohls teaches at the University of Coburg in Integrative Health Promotion. Prof. FitzGerald and Prof. Giordano were invited by Prof. Dr. Niko Kohls to Coburg University. They were guests of an international conference that was organized together by Dr. Thomas Kriza and Prof. Kohls in the context of the project "Der Coburger Weg".