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Designer babies: A call for a debate on the ethics of human selection?

In November last year, during the second International Summit on Human Gene Editing, a presentation by Chinese researcher He Jiankui raised much debate. He claimed to have created the first genetically modified twins using the CRISPR-technique – a system that allows for heritable changes into the DNA. This year, Russian researcher Denis Rebrikov announced research along the same lines, expressing his intention to use CRISPR for embryos to prevent deafness. The reaction to He’s research has been ambiguous. While he has been criticized by fellow researchers and the Chinese government, his work was funded by the same government; he also hardly worked alone or in secrecy and seemed to receive at least implicit support from part of the international research community.

The concept of “designer babies”, where human germline editing is used for selection and enhancement, is for most people a dystopian scenario and calls for an urgent public debate. Developments in recent decades have already led to international guidelines. The Oviedo Convention, a Council of Europe instrument that entered into force in 1999, establishes a connection between human rights and biomedicine and aims to preserve human dignity in the field of bioethics, as already suggested by its full name: The Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine. However, scholars have pointed at the notable absence of countries such as the UK and Germany among the contracting parties, showing that while the former considered the Convention to be too restrictive, the latter viewed it as too permissive.

In principle there is consensus among countries, researchers and the public that human germline modification is off limits. Still, scientists call for a big debate which includes scientists, patients, policy makers, ethical specialists and the general public. Scientists are often blamed for defining a “constructive” debate as one which only includes the scientific perspective. They often appear to reject ethical or religious considerations – which sometimes are in fact sympathetic to genetic modification as an alternative for abortion – as being “political”, thus polluting a “pure” and “rational” debate. Biotechnologists are also accused of wishing to independently set the parameters of the debate, while the impact of their research regarding human germline editing – thus creating changes to the individual’s genome in such a way that the change is heritable – will have an enormous impact on the future of humanity.

A complicating factor in this debate is the increasing intermingling of public and private funding. Publicly funded academic research is often complemented by the privately funded biotech industry. The recently announced collaboration between the University of Berkeley and GlaxoSmithKline, for example, is welcomed for “potentially yielding new technologies using CRISPR that would rapidly accelerate the discovery of new medicines” while also raising questions about the role division and the independence of academia.

Edited by: Dr. Olivier Vonk

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