Is do-it-yourself gene editing wise and ethical?

CRISPR, the cheap and easy technique for making precise changes to DNA, has researchers around the world racing to trial its use in treating a host of human diseases.

But this race is not confined to the lab. Last month, Josiah Zayner, a biochemist who once worked for NASA, became the first person to edit his own genes with CRISPR, in order  to remove the gene for myostatin, which regulates muscle growth, even though it might have led to  unintended consequences, such as  tissue damage, cell death, or an immune response that attacked his own muscles.

Other people are now starting to use gene modification for a variety of maladies such as colour blindness,  or implanting a gene for  a rare genetic mutation called tetrachromacy that is sometimes found in women and allows them to see in the ultraviolet spectrum.

Biohackers, as they are called, believe it is a basic human right to access and edit one’s own genome. “I am of the opinion that your genome is your own,” said one. “I think that it is important that people have the ability to choose what kind of gene expression they want for themselves. This ethos of “my body, my choice” is used to underpin arguments for health, reproductive and disability rights, but should it extend to the right to edit our own genes? What about the potential unintended effects of using untested technology? And will allowing broad access to CRISPR risk creating a group of “superhumans” with enhanced senses and abilities?

Is there a moral difference between gene editing for medical therapy versus enhancing ordinary abilities?  Some, like John Harris, a bioethicist at the University of Manchester, UK,  does not believe there is a significant difference. He thinks the biohackers could hasten the safe use of CRISPR in humans.”There is a long and noble history of both doctors and scientists experimenting on themselves,” says Harris. “It has proven tremendously valuable in the public interest.”

“At home” gene editing is not at the moment illegal, (except in Germany, where CRISPR kits have been banned), and  none of the biohackers are actually practising medicine on anyone else.  Moreover , most people agree that  genome editing is not ready to be offered for sale to the general public.

The World Anti-Doping Agency is banning all forms of gene therapy, or gene doping, from international competitive sports from 2018. However, gene editing is very difficult to detect. Ishee  Günes Taylor, who also works with CRISPR at the Francis Crick Institute in London, believes that successful gene editing will be more difficult than the biohackers think, although there could be scientific benefits to monitoring how biohackers modify their bodies, giving us more information about how CRISPR works in humans. But the potential for harm implies that this would be unethical, and DIY experiments should be more heavily regulated.

At the moment the truth is that the biohackers are going to do it anyway, and in any case it’s hard to write regulations for people playing around with science in their garages. The biohackers believe it is a matter of choice, helping make genome editing safe and accessible for the wider public.

But how can we, the public, make sure the experimenters are responsible and that they acknowledge the possible consequences of spreading CRISPR widely?  The horse is virtually out of the stable, for good or evil.  Let us hope good prevails. It has a tough time in other areas of life.    I tend to think that Epicurus would say that the gene editors are playing god, and are not to be trusted, and that is scary.

(Based on an artcle by Alex Pearlman in New Scientist, but heavily edited for length)

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