GESTIÓN EN SALUD PÚBLICA: Enhancement, disease, and compulsory gene editing

domingo, 22 de julio de 2018

Enhancement, disease, and compulsory gene editing | BioEdge

Enhancement, disease, and compulsory gene editing

Bioedge

Enhancement, disease, and compulsory gene editing

by Xavier Symons | 21 Jul 2018 |

Media outlets were in a frenzy this week after the Nuffield Council on Bioethics released a new report stating that gene editing of embryos for desirable traits was “not in itself unacceptable”.

Despite the interest that the report has generated, the idea of enhancement is not a novel one. Several bioethicists have argued that we have a moral imperative to select for the best traits when implanting embryos produced in vitro. The foremost proponent of this view, Oxford University bioethicist Julian Savulescu, has argued that the biomedical principle of beneficence should apply to our reproductive decisions and that we need to exercise “procreative beneficence” when using assisted reproductive technologies to conceive.

In an article on the blog Practical Ethics this week, Savulescu considered a related topic, namely, whether we have a duty to select for healthy children where we have the opportunity to gene edit human embryos. If parents were to produce only one embryo from IVF, and that one embryo were to be affected by a serious genetic disorder, then they may have the obligation to gene-edit the embryo. To fail to do so would be to unjustly inflict a life of suffering on the future child, Savulescu suggests. “At the very least, children should have the chance to grow up unhindered by curable major diseases”, he writes.

Last year, an essay published in The Atlantic explored the idea of compulsory gene editing for serious diseases. Readers responded with concerns that state-mandated gene editing could lead us toward a criminalisation of traditional procreation for parents with bad genes. “As soon as we go down that path, we inevitably get to the concept of who should be allowed to live and reproduce”, one reader wrote.

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?