GESTIÓN EN SALUD PÚBLICA: BioEdge: UK bioethics thinktank endorses germline modification

domingo, 22 de julio de 2018

BioEdge: UK bioethics thinktank endorses germline modification | BioEdge

BioEdge: UK bioethics thinktank endorses germline modification

Bioedge

UK bioethics thinktank endorses germline modification

by Michael Cook | 21 Jul 2018 | 1 comment

The UK’s leading bioethics institute has given a green light to intergenerational modification of the human genome. In a major study of the ethical and practical issues (PDF) involved in genome editing and human reproduction, the Nuffield Council on Bioethics has concluded that it is “morally permissible”, provided, of course, that it is safe.

“It is our view that genome editing is not morally unacceptable in itself,” said Professor Karen Yeung, the chair of the working group which produced the report. “There is no reason to rule it out in principle.”

Professor Jackie Leach Scully, of Newcastle University, a co-author, told The Guardian that heritable genome editing could become an option for parents “to try and secure what they think is the best start in life” for their future children.

Once again, the UK is breaking new ground ethically. While the Nuffield report is purely advisory, most of its recommendations on similar topics have eventually become law in the UK. For this reason, its advice to the British government is of global significance.

But the conclusions of the report were immediately criticised – and in fact no government has authorised heritable modification of the genome. Dr David King, Director of Human Genetics Alert, told the BBC: "This is an absolute disgrace. We have had international bans on eugenic genetic engineering for 30 years. But this group of scientists thinks it knows better, even though there is absolutely no medical benefit to this whatever. The Nuffield Council doesn't even bother to say no to outright designer babies. The people of Britain decided 15 years ago that they don't want GM food. Do you suppose they want GM babies?"

And Marcy Darnovsky, of the Center for Genetics and Society, in California, commented that the report acknowledged that if reproductive gene editing were permitted, it would be used for enhancement and cosmetic purposes. “They dispense with the usual pretence that this could – or, in their estimation, should – be prevented. They acknowledge that this may worsen inequality and social division, but don’t believe that should stand in the way. In practical terms, they have thrown down a red carpet for unrestricted use of inheritable genetic engineering, and a gilded age in which some are treated as genetic ‘haves’ and the rest of us as ‘have-nots’.”

The ethical arguments in favour of modifying the genome are set out at some length in the long version of the report. Fundamentally they seem to rest on the rejection of “genomic essentialism” – that the genome defines a person. The report says that “genomic intervention is only one – and probably not the most significant – of the decisions that parents will make that affect their offspring (and it may become progressively less important as other biographical factors intervene, especially to the developing sense of self-identity).”

It goes on to ask whether “editing the genome of one’s descendants might amount to an infringement of human dignity”. The answer is that “We do not find the concept of human dignity helpful in this context. In our view, what is morally important about human beings is not dependent on the possession of a particular set of genomic variations: we find the concept of ‘the human genome’ to lack coherence in any case.”  

What is morally important about human beings is not a topic which the report discusses in any great detail

Sunday, July 22, 2018

We’re back! Holidays are over and BioEdge has resumed publication. Now, while we’re still fresh and enthusiastic, is the time for our readers to make suggestions for improving our coverage.

This week the lead story focuses on a report from the Nuffield Council on Bioethics in Britain which has given an in-principle endorsement to germline modification. While the report is purely advisory, most of its recommendations on similar topics have eventually become law in the UK. For this reason, its advice to the British government is bound to have a world-wide impact.

Most people, including members of Parliament, will only read newspaper articles about this radical development in genetics. But it is fundamentally a philosophical, not a scientific question: what makes us human?

The Nuffield report fails to answer this, but the full report is scathingly critical of what it calls “genomic essentialism”: we are not our genes. Instead, as I read it, it has framed the question as a consumer rights issue: provided that the technology is safe, don’t couples have a right to have the kind of children they want?

What do you think?