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Of Glass and Ice

Descending into Iceland from orbit is breathtaking if you do it right. Often you can see the northern lights, the glaciers and the glass spires of Reykjavik all contributing to a stunning vista. On my most recent trip however an absence of solar flares and cloud cover meant that I sank into a dull grey fog as the cruiser landed in Reykjavik, as if the city hid some troubled thoughts. I certainly did.

I’ve been visiting Iceland for the past 12 months regularly to interview, in person, Layola - the first human being with DNA successfully manipulated via CRISPr technology. In 2018 Layola received advanced recombinant DNA configuration across her whole genome using CRISPr - essentially using natural machines made of proteins and RNA to artificially switch some of her genes on and off. The purpose of the procedure was to cure her severe autism and the procedure took 12 months of intensive treatment.

Layola was the first human to receive a CRISPr procedure and the only human to receive the procedure since.

There is no question that her autism was cured, and Layola will tell you she is happy with the outcome, but to call the treatment a success requires understanding the full effects of the treatment spanning Layola’s behaviour, her pre-frontal cortex, the inner workings of international medical advisory board (IMAB) and 50 years of quarantine in Iceland in a glass box and with limited contact with the outside world.

In the period 2000 - 2018 Autism was a common diagnosis. Poorly understood, we lumped the condition with ADHD and tried to pinpoint the cause on vaccines, gluten sensitivity in diet, pre-birth oxygen flow, ambient 5G radiation and many more besides.

Layola was born in 2000 in southern New Jersey in a region called south shore - now completely submerged - to two parents, Marshal and Alice. Loving parents, a middle class family and a child with autism. First diagnosed at 4 because of early learning difficulties and later confirmed aged 7 because of extreme sensitivity to touch, a lack of all spoken language and avoidance of eye contact.

Aged 14 Layola was sent to a privately funded retreat - where she was supervised 24/7 by carers and given a secure compound to explore, play in and call home. What was going on inside Layola’s mind at the time was largely misunderstood at the time but her externalities were extreme. Severe self harm, extreme aversion to human contact, complete and utter dependency on specific sensory inputs such as sounds and colors.

In 2018, 50 years ago this week, Layola was selected and approved for CRISPr gene recombinant therapy.

“I suppose, you could start with the words. That was the first thing I remember coming out of the autism. I had been processing sounds my whole life but never in any organized fashion - but to hear words and speaking as you and I are now - that was something entirely alien and foreign”

Layola speaks with a quiet confidence, at once soothing and calculated. Each word carries a pause behind it as if each word is selected based on it’s own merit, no word more or less important than the last.

The facility where Layola lives is difficult to describe favorably - a modest secure building in downtown Reykjavik, once the cutting edge of design, connected grid-living and security but long surpassed by the technology companies now crowding the downtown skyline and subway advertising.

Still, every year the IMAB and the CIA renew their contract to secure the building 24/7 with an armed staff and every 5 years a carbon/neutron probing appraisal is made of the 20-foot thick concrete walls surrounding the building. Further security details, habits, quirks and insights that I’ve picked up visiting Layola’s home over the past year are omitted from this article at the request of the CIA.

When I asked if she was happy in her home, there was a pause followed by the measured response of “I suppose I’ve never known more or less but all my needs are met and I remain content.”