GESTIÓN EN SALUD PÚBLICA: BioEdge: Are Western scientists crossing their fingers when they damn He Jiankui?

domingo, 24 de marzo de 2019

BioEdge: Are Western scientists crossing their fingers when they damn He Jiankui?

BioEdge: Are Western scientists crossing their fingers when they damn He Jiankui?

Bioedge

Are Western scientists crossing their fingers when they damn He Jiankui?

by Michael Cook | 24 Mar 2019 |

The rending of garments by horrified scientists after Chinese researcher He Jiankui announced that he had altered the germline of two babies was heard around the world. But was the outrage sincere? An article in Nature Biotechnologyby two prominent genetic engineering sceptics suggests that it was not.

Donna Dickenson, of the University of London, and Marcy Darnovsky, of the Center for Genetics and Society, in Berkeley, California, point out that “the words and actions of key US and UK scientists” encouraged He to proceed. In particular, they point an incriminating finger at last year’s report on human germline editing from the Nuffield Council on Bioethics, in the UK.

This widely publicised and influential document argued strongly that there were no “absolute ethical objections” to germline editing. And it actually contended that it was morally imperative to strive for legalisation (report, section 5.2). Dickenson and Darnovsky slam Nuffield for contributing to “an increasingly permissive climate among elite scientists that may well have emboldened He”.

In a blistering analysis, they point out that the report blithely skated over the issue of risk to the child and never considers the welfare of the mother. No clinical trials would be needed, just follow-up studies – even though it is impossible to ensure compliance.

Furthermore, they remind readers, “Germline gene editing is not approved under international law; rather, it is strongly discouraged or prohibited under the UNESCO Declaration on the Human Genome and Human Rights and the Council of Europe Convention on Human Rights and Biomedicine”.

In all of its reports Nuffield stresses the need for public consultation in decision-making. But Dickenson and Darnovsky are scathing about its commitment to consultation:

a genuine debate will require proponents of heritable gene editing to refrain from labeling those who disagree with them as scientific know-nothings who are simply fearful of dystopias and ‘designer babies’. This rhetorical move serves only to disqualify large segments of the public that proponents say they wish to engage.

The authors conclude: “the salient question at the heart of the current debate is not the conditions under which heritable genome editing should proceed, but whether it should proceed at all.”

Michael Cook is editor of BioEdge

This is not an appropriate venue for a discussion of my age, but I think that most readers will sympathise with my occasional interest in turning the clock back a few years. What if the hoary adage, "you're only as old as you feel", could have the force of law?

Last year, a flamboyant positivity guru tested this theory in a Dutch court by applying to have his legal age changed from 69 to 49. To no one's surprise, he lost, but the reasoning for the adverse judgement was peculiar (as reported in the media, anyway). The court declared that too much government paperwork depends upon an agreed biological age. At a time when self-identification for gender is widely accepted, this line of reasoning is surprisingly weak.

Which brings me to an intriguing article in the Journal of Medical Ethics (see below) which supports the notion of self-defining age. The author bases it on the need to prevent discrimination on the basis of age, or ageism. I wonder how the courts will respond to this argument.