Genome editing: Don’t cross the Rubicon
11.06.2015 - Modern biotechnology has already helped many patients and we need to continue research and development because many diseases cannot be cured yet. However, inappropriate use of technology has serious side effects for patients and society. That is why strict rules – if possible at cross-national level – are necessary.
Until recently, there had been consensus that intervention in the human germ line is not acceptable. Where EU Law is applicable, we have fixed this limitation, for example in the Clinical Trials Directive. The technology cannot be patented under the Patent Directive and its support under Horizon 2020 is not possible. Also, the much bigger Council of Europe (including e.g. Russia and Turkey as well as the 28 EU member states), has banned germ line intervention in its Convention on Human Rights and Biomedicine.
Why is an intervention in the human germ line unacceptable? Any medical intervention is linked to a risk. Intervening in the human germ line is of particular high risk and, most importantly, there is not only a risk for the baby created but also for all future generations. We definitely do not know enough about the complex interaction of genes and their different functions to manage this risk.
A very important principle of medical ethics is informed consent. No baby created by germ line intervention can give its
consent and of course future generations cannot, either. To develop the technology it is necessary to manipulate and destroy hundreds or even thousands of human embryos. Babies created by germ line intervention are in fact experiments themselves. To allow intervention in the human germ line it would be necessary to set a limit and to define a normal human being. Even though with today’s technology, influencing human intelligence is not possible, but of course everybody knows intelligence is partly determined by our genes. It is a question of medical definition to call a human being mentally handicapped. Depending on how one defines the threshold more or less people are underperformers What kind of limit would allow intervening in the human germ line? Similar examples can be found e.g. in the size of people.
For whom all the ethical arguments are not convincing – I think they are but there may be some stakeholders for which they are not – I would like to add an argument that
Edward Lanphier, chairman of the Alliance for Regenerative Medicine in the USA, and CEO of Sangamo Biosciences, alongside with other high ranking representatives of science and biotechnology used in an article for Nature: “We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development...” I am sure there would be a great public outcry and the scientific community is well advised to concentrate on the huge amount of alternative approaches that are not ethically controversial.
Dr. Peter Liese
For more than ten years Liese (50) worked as a physician before he was elected a Member of the European Parliament in 1994 for the Christian Democrats (European People’s Party, EPP). He is a member of the Committee on the Environment, Public Health and Food Safety (ENVI), where he has also been coordinator of the EPP Group since 2009. In addition, he is deputy member of the Committee on Foreign Affairs. Peter Liese has been board member of the CDU since 2012.http://www.european-biotechnology-news.com/people/editorial/2015/peter-liese.html