"Who am I?" by Brian Routledge
Born in the depths of the Sun, the neutrino burst forth, expelled by a massive solar flare and headed into space where eight minutes later it would change someone’s world. It passed through Mercury’s core, unscathed, avoided Venus which lay, at that moment on the other side of the Sun and plunged into the fragile atmosphere of a blue and white planet. Unhindered by solid matter, it passed effortlessly through the air, roof tiles, brick walls and wood flooring of the house until it encountered organic matter where it slipped through the molecular interstices of the soft tissue and smashed into the double helix of a cell on the point of dividing before continuing on its eternal path.
The immature neonatal nucleic acid repair enzymes missed the damage to the vital control gene that, amongst other functions, organised embryonic neural development.
The new, young parents placed the sleeping child in the newly constructed crib. Their tight embrace and tender kiss, spoke of their joy, hopes and expectations.
The suspicions of the Mother occurred earlier but the one year developmental check confirmed their worst fears. Disbelief, anger, confusion and grief followed, out of which grew a steely determination to provide the best life possible for their child and to maximise their potential. Every avenue of possibility was explored and years of intensive therapy resulted in developmental improvements. Walking was achieved, but late. A level of communication was established, albeit non-verbal. Simple acts such as holding a spoon and feeding themselves were celebrated as if it was Christmas. The parents and sibling gradually recognised and learned to read and understand the personality and character of their child, as it emerged from the genetic maelstrom the neutrino has created. But a point was reached when, it seemed, little or no more progress was being achieved. The family loved the child for who they were, not how they were.
The man in the dark suit put the dossier on the conference table, next to his glasses and leaned back, stretching his neck and shoulder muscles. The expectant faces of those gathered were focussed on him, awaiting his reaction and response.
“So it works; complete genomic repair and resequencing.”.
Heads nodded.
“There are no hidden side effects or consequences?”.
“Not that we have identified” said the man in the white coat at the other end of the table. “The animals showed full restoration of gene product function. Metabolic and behavioural testing does not appear to deviate from the established control norms.“.
The man paused, deep in thought before announcing
“The foundations for the spin-off company has been agreed and the necessary paperwork is being drawn up. You will receive contracts when they are ready. This will put some distance between the university as the research establishment and the development of the commercial aspects.” He looked at the others over the rim of the glasses perched on his nose. “Ladies, Gentlemen, I congratulate you. We stand on the precipice of a new era in which rare genetic diseases will be eliminated forever from the human genome. Your names will stand alongside, Mendel, Crick, Watson, Franklyn, Charpentier and Doudna in the pantheon of Genetic Heroes.”. He stood.
The cough from the man in the white coat caught the Black Suit’s attention.
“If I may just say something” he began,. ”I agree with your statement but the results from the germ line tissue are not as convincing as for the somatic cells. We’ve documented non-functioning and, in some cases, even aberrant germ line cells. The technique, in a small number of cases, appears to introduce further error into the germ line. I would recommend, if I may be so bold to advise, that the best we can offer, at the moment, is only single generational correction.”
“Noted” said the man the black suit. “Can the problem be solved?”
“With time and enough money” said the other man. Heads nodded again.
“Good, take the next step” said the man over his shoulder as he left the room.
The assembled faces now turned to the other end of the conference table. “What we need now” said the Chief Scientist “ is a suitable candidate. Ideas anyone?”
The announcement set the airwaves buzzing and the cybersphere humming with activity. It made the first item on the breakfast, midday and evening versions of broadcast news. Reporters from the 24 hour news stations sought out any scientist, religious leader or philosopher who was willing to give a comment and/or an opinion. Switchboards for radio phone-in programmes glowed bright red as the topic became the latest centre of debate. Charities and online support groups for rare diseases, and some not so rare, were flooded with requests for more information about where and when the technique was available.
No parent ever gives up hope for their child and the promise of an immediate cure opened an old wound, even with families who had learned to accept their child, disabilities included. The El Dorado of normality, the Promised Land, the Utopia where their child could now become the individual they’d first desired and wished for had become a reality.
There was an initial screening process comprising sequencing of the child’s damaged gene followed by a comprehensive psychological analysis of the parents, probing their motivation for considering the procedure for their child and testing their capabilities to cope, in the short and long term, with the changed family circumstances that would arise. Media training was given to prepare the family for public scrutiny that would inevitably result when the news broke. Crowd-funding pages were set up, appeals made and sponsored events organised to provide the necessary finance and famous wealthy donors contributed in return for a namecheck.
The man in the dark suit put down the report. The assembled waited with baited breath.
“In the opinion of the experts, the child does not have either the capacity to understand or the ability to communicate beyond a few simple signs. There is no detectable indication of higher cognitive functions. They conclude that the child is unable to provide informed consent. The final decision is the parents.”.
It took time to prepare everything but the day finally came to administer the therapy. The Chief Scientist and man in the black suit had escaped from the crowded press conference and were now standing outside the treatment room. Inside, the parents held hands and talked quietly to the child as a distraction from the pain caused by the insertion of the line into a vein through which the repair and resequencing agent would be administered. The nurse connected the line to the bag, opened the valve and gave the bag a gentle squeeze. The first drops fell.
“Something is going on. I’ve been asked lots of questions recently by strangers and I’ve heard the word ‘damaged’ a lot which I don’t really know what they mean but I think it indicates I’m different. I tried to answer their questions but they didn’t know how to communicate with me. My parents do but they didn’t ask me any questions. I think I must be ‘damaged’ because I’ve never been able to do many of the things my brother does. They say I will soon. I sensed my parents concern this morning and then they brought me here. I don’t feel unwell and I’m not in pain. I don’t really like hospitals, the smells and lighting make me feel a little scared. I remember that if I’m at a hospital, bad things happen to me, like just now when they stuck a needle in my arm. My memory isn’t always too clear. I’ve always found it difficult to get my body to work and I don’t fully understand everything that’s said to me but I’ve got better at it and I’m learning as I get older, albeit slowly. I’m still a child. I try to respond to everyone as I like people, but it is all so difficult and tiring as my body won’t do what I want or it takes a long time before my thoughts result in actions. I think some people are scared of me. My parents were impatient at first but now they realise and understand me more so they wait. I’ve learned how to ask for food with simple signs I can manage and my Mother can easily interpret my moods. I don’t think I’m damaged. I get angry, I laugh, I smile, I enjoy being alive. I’m happy. I love my parents and I know they love me even though I’m different. I’m not a freak or a monster. Will I still be me If I’m repaired? What will change? Will I still like bananas? Will I even be able to talk? Will my favourite colour remain blue? Will I still prefer Star Trek to Star Wars? Perhaps I might not love my parents and brother anymore. I’m feeling a little strange now and my head is hurting. I think I need to sleep.”