On Monday, the German Ethics Council made public a 230-page report discussing their current position on human genome manipulation and in particular, germline editing. According to the press release published on 9 May, a few days before the report, “germline interventions currently too risky, but not ethically out of the question”.
The council made up of 26 ethicists, legal scholars, scientists, and other experts unanimously agreed there are no compelling philosophical arguments against altering human germlines, which they write is not “in principle, ethically reprehensible.”
The birth of the first genetically modified babies shocked the world and has stoked widespread concern and necessary ethical investigations, including this one. Last year, the embryos of two twin babies were seemingly “vaccinated” to make them immune to the AIDS virus using the CRISPR-Cas9 the gene-editing technique.
The World Health Organization called for the establishment of a global registry of gene editing research on humans last March. And many scientists would now agree, genome-editing in the human germline should not be regulated by the scientific community but by law.
All members agreed “ the human germline is not inviolable”, although not all are in favour of the pursuing germline interventions – some are concerned the possible benefits may not outweigh the potential downsides.
Nonetheless, the authors recognise germline editing as “a legitimate ethical goal when aimed at avoiding or reducing genetically determined disease risks”. But also argue that germline editing is ethically irresponsible at present – there are technological hurdles and uncertainties that still need to be overcome to reduce risks.
Furthermore, the authors call for a moratorium on pregnancies with gene-edited IVF embryos — as many other scientists have done following the announcement of the CRISPR twins in China — until such a point that suitable guidelines can be established, including appropriate oversight procedures and accompanying governance structures. But they urge the Federal Government and the Bundestag to work towards an international agreement.
Germany has remained reluctant to become involved in germline editing, perhaps in the shadow of the Nazi eugenics experiments during World War II – for fear genome editing could lead to similar eugenics practices in modern society.
For this and many other reasons, the authors argue that “any appropriate assessment of germline interventions must go beyond a mere risk-benefit analysis”. The paper calls for more basic research on germline editing to “improve the level of knowledge about safety and efficacy.”
In response to those arguing against germline editing to prevent the violation of an embryo’s dignity, the authors write, “the question also arises as to whether the renunciation of germline intervention, which could spare the people concerned severe suffering, would not violate their human dignity, too.”
Indeed, genetic interventions could potentially spare a child suffering by preventing devastating diseases like cystic fibrosis or sickle cell. But a huge amount of legislation and public discussion should take place before genome editing is used in embryos.
The council aims to make its discussions and positions transparent and accessible to the public. The report also includes a novel analytical toolkit and decision tree of the possible decision pathways.