Alea Iacta Est

By Chris Cole

sfgenreIn hindsight, the opponents of the Reykjavik laws never really had much of a chance. What began as a suggestion, a “What if…?” in Iceland in the late twenty-teens had, predictably, stirred up a hornet’s nest of social and tabloid media vitriol. But the first bills allowing and protecting the active screening of all pregnancies, not just those proceeding from in vitro fertilisation, for all known genetic defects and diseases slipped almost unnoticed through the legislature of several countries, and states.

The most vocal opposition came from the conservative far right of the political spectrum, from religious sects and leaders. One prominent American actress, quoted in a Catholic news site article summed up a typical viewpoint with: “Iceland isn’t actually eliminating Down Syndrome. They’re just killing everybody that has it.” Those with a more leftwards political leaning, and less religiosity, didn’t see much of an issue with allowing women to make a more informed decision about how to proceed if a serious problem was found. Who wouldn’t want to have the choice to avoid bringing a severely disabled child into the world? they argued.

The seemingly perpetual, tail-chasing arguments about the sanctity of life and when an embryo becomes a person, raged on. After the initial high-profile outcries and responses, the media moved on to other more pressing concerns, and the plaintive declarations of both sides became just so much more background noise to a society with bills to pay, places to go, things to do. Quietly, at first, a less vehement minority raised their voice from the sidelines. These were the denizens of a moral middle ground, with no particular axe to grind, and from their less polarised vantage point they began asking a different question. The pace of new discoveries in the genetic basis of disease had been accelerating for decades, and with the completion of the Human Genome Project in the earliest years of the twenty-first century, and the development of ever more efficient tools, knowledge in this area had grown exponentially. What if, wondered those quiet voices, we expand our horizons beyond the major defects? Chromosomal abnormalities like Downs had been the soft, but still controversial, target for years, but what about other diseases? What might happen if we turned our attention to less disabling conditions? Diseases, or even just predispositions to them that, given the choice, no parent would willingly wish upon their child. It seemed a reasonable next step. But what if that proved not enough? What happens when the line between disease, and simply undesirable, becomes blurred? The thin edge of the wedge position prompted mostly eye rolls, discomfited expressions, and derision as argument ad absurdum that was light years away from being of any practical, real-world concern.

There was the low-hanging fruit of long known single gene defects, like Huntington’s disease, cystic fibrosis, haemochromatosis, muscular dystrophy, haemophilia, Marfan’s syndrome… the list was long. But lurking in the higher branches, more complex diseases were now there for the taking. Multi-gene disorders where a complex interplay of genetic and environmental factors bestowed not a certainty of disease, but a reliably predictable likelihood of developing it. Perhaps not a lifelong disabling condition, but one that would foreshorten it. The shiniest fruit in those upper branches was, perhaps, the Big C. Cancer. Some cancers come unannounced and unwelcome, out of nowhere, so-called de novo mutations that happen randomly in your own cells later in life, not inherited from your parents at all. But many, maybe most, were now predictable, the products of a baroque dance of oncogenes, defective tumour suppressor genes, and others, which are inherited. Which can be screened for. And obliterated.

At first, as with most medical advances, it was the privileged minority of affluent Westerners who made use of the new technology. There was more resistance, and slower uptake, in the US. Congress was divided and took over a decade to yield to increasing secular public pressure, though many individual states blazed their own path well before the feds caught up. Western Europe embraced the possibilities much more quickly, though Germany took a more cautious approach. Perhaps given a moment of pause by shadows of a century past, she adopted unrestricted screening more warily. Or, perhaps, the Germans were simply thinking farther ahead, concerned that once the genie was set loose from the bottle, good intentions may amount to little comfort in the end. Perhaps they were prescient.

Though Iceland and its capital were immortalised, enshrined as colloquial terms for all laws relating to comprehensive antenatal genetic screening (or CAGS, as it became known), it was simply a quirk of fate, of a small affluent and secular population, that this land of ice and fire was the first to completely eradicate Down’s Syndrome, and then a raft of other disorders in quick succession. By the early 2020’s, every first world nation on the planet was doing the same. Chromosomal and single gene disorders all but vanished within a single generation. Less than the blink of an eye on both an evolutionary, and a cultural, human, timescale. The next to fall were the now genetically predictable diseases of childhood. Within a decade of the universal adoption of CAGS, juvenile diabetes had become so rare, many newly qualified doctors would never see a child with it. Diseases of later life, less cut-and-dried, but still amenable to probabilistic forecasting, came next: premature heart disease and stroke, type 2 diabetes, most types of dementia including Alzheimer’s disease, and half of all cancers. Gone. It was early days, but the life expectancy of a newborn “CAGS baby” in 2025 had increased by between 5 and 8 years in most developed countries. More importantly, the expected number of healthy years climbed even more sharply. A “CAGS kid” in 2030 had a better than sixty-five percent chance of clocking up a century and would spend the overwhelming majority of those years in active, productive, good health.

It was hard to argue with the benefits CAGS had brought, certainly to individuals. Or at least, to individuals living in affluent nations with universal access to the technology. Dark clouds loomed on the horizon, however. Globally, the inequity in availability and application of CAGS merely exacerbated the already enormous divide between the haves and the have-nots. The disparity in lifespan, health outcomes, and quality of life had always been there, but CAGS was a self-perpetuating force of change on a tectonic scale, driving the chasm ever wider with unstoppable momentum. Increasingly, the countries with the highest burden of disease were those with the fewest resources to deal with it. Full scale state-wide armed conflict had yet to erupt, but protests and isolated acts of terrorism have become more common in recent years. Globally influential corporations who in decades past were forced to yield to pressure and supply anti-HIV and other drugs at affordable prices to lower income countries, were steadfast in their refusal to do the same with CAGS. And while it isn’t an entirely Western-centric phenomenon — China leapt upon the technology with great enthusiasm, and was one of the earliest adopters — some commentators feel it can only be a matter of time until a nation such as India takes unified political, and possibly military, action.

Closer to home the changes are more subtle overall, but increasingly obvious as a new generation grows older without many of the hazards and infirmities that plagued their forebears. There is still plenty of disease and injury to go around, but so much of what was commonplace only half a century ago is now known only in the old, and in the “third world” — that rapidly expanding morass of humanity far enough removed from most people’s immediate concern as to remain nebulous, and not really part of their personal world. And so it is that young people with non-screenable diseases, and those of us born in the years “BC” (Before CAGS), have become objects of some fascination to our younger cohorts. Small children have always stared, pointed, asked indelicate questions about people who are different. Older children have always sniggered, made jokes about and stigmatised those who are “not normal”. It seems we are, however, by so suddenly making so many conditions so very, very rare, creating a new generation in whom this behaviour is carried forwards into adulthood without moderation.

Recently, we have reached a new tipping point. The debate over whether obesity is a disease, or the result of a collection of life choices, has worn on for decades. With the discovery of a whole suite of interdependent genetic predictors that account for around eighty percent of the likelihood of becoming morbidly obese, the last few years have seen passionate, and sometimes violent, arguments for its inclusion or exclusion from CAGS. The official position has remained firm so far — it is not permitted to report it as an actionable disease risk — but unofficially, with the testing technology so cheap and widely available, and even medical opinion still divided, people are doing it. And being fat has proven to be the bridge over the Rubicon, irrevocably blurring the dividing line between disease and “undesirable” traits. As I write this, people are routinely, if illegally, also screening for height … eye colour … fast-twitch muscle fibre ratio, along with other predictors of athletic ability … and most controversially … intelligence. The penalties for labs caught reporting gene suites which predict (to at least some extent) intelligence are high, but so are the amounts of money changing hands. Positive eugenics may remain illegal for a while, maybe indefinitely. But it is increasingly clear that even without actively editing genes, the drive to give our children the best possible chance in life, to not let them lag behind others, will push us inexorably towards a future where Gattaca will be our reality, and our children will live to see it.

I am the last person to be born, or that will ever be born, in the United Kingdom with Emery-Dreifuss Muscular Dystrophy. My daughter is still too young for children of her own, but one day, my grandchildren will have to use Google or look up Wikipedia to know what a person with EDMD was like. They might or might not believe her when she tells them about their granddad who got around slowly with a walking stick even in his thirties and, later, a wheelchair for much of the time, and who had a pacemaker because of his dodgy heart. Because such people simply won’t exist anymore. I take a certain amount of bemused solace in the thought that, to my own grandchildren, I will be for all intents and purposes a mythological creature. I am immensely grateful that they will not be troubled by my disease, but some small part of me fears their growing up surrounded by increasing perfection. My disorder does not define me, but it is our imperfections that shape us, our responses to them and our choices, that make us who we are. It is our imperfections that make us human. Some of us may have been children of a lesser god, but it’s my lasting hope that they know that we lived, and loved, as richly and as deeply. That we were people, too.

Marcus

Notting Hill, England

February 2035

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About The Author

Chris Cole

chris cole 200Chris is an enthusiastic devourer, and occasional hopeful creator, of compelling science fiction. An antipodean devotee of Douglas Adams, Terry Pratchett, Orson Scott Card, and crepes that have been cooked just right, he dodges marsupials en-route to work, and spends vast periods of time staring at the sky. In his spare time, he struggles to improve his disc golf handicap, and occasionally lends a hand in sorting out the sick and injured hairless apes of the world. He may or may not be far too familiar with 8-bit computer games from the 1980's.

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nuke conflux 2017 200Ion Newcombe is the editor and publisher of AntipodeanSF, Australia’s longest running online speculative fiction magazine, regularly issued since January 1998, and conceived back around November 2007. He has been a zealous reader and occasional writer of SF since his childhood in the 1960s, and even sold a few stories here and there back in the '90s.

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mark web 200Mark Webb's midlife crisis came in the form of attempting to write speculative fiction at a very slow pace. His wife maintains this is a good outcome considering the more expensive and cliched alternatives. Evidence of Mark's attempts to procrastinate in his writing, including general musings and reviews of books he has been reading, can be found at www.markwebb.name.

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Terminating Train
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garry dean narratorGarry Dean lives on the Mid Coast of New South Wales Australia, and has been a fan of SF for most of his natural life. Being vision impaired, he makes good use of voice recognition and text to speech in order to write. Many of his stories have appeared in AntipodeanSF over the years, and his love of all things audio led him to join the narration team in 2017.

You can read examples of Garry's fiction on his website <https://garrydean.wordpress.com>

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timonthy gwyn 100Timothy Gwyn is a professional pilot in Canada, where he flies to remote communities. During a lull in his flying career, he was a radio announcer for three years, and he is also an author.

In addition to short stories at AntipodeanSF and NewMyths.com, his SF novel is available internationally in print and ebook formats. "Avians" draws on his love of alternative aviation to tell the tale of a girl who runs away from home to join a cadre of glider pilots on a world without metal or fossil fuels.

On Twitter, he is @timothygwyn, and his blogs are at <timothygwyn.com>.

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lauriebell 2 200Laurie Bell lives in Melbourne, Australia. She was that girl you found with her nose always buried in a book. She has been writing ever since she was a little girl and first picked up a pen. From books to short stories, radio plays to snippets of ideas and reading them aloud to anyone who will listen.

She is the author of The Butterfly Stone (available now).

You can read more of her work on her blog Look for her on Facebook <www.facebook.com/WriterLaurieBell/> or Twitter: <@LaurienotLori>

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marg essex 200Margaret lives the good life on a small piece of rural New South Wales Australia, with an amazing man, a couple of pets, and several rambunctious wombats.

She feels so lucky to be a part of the AntiSF team.

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pixie willo 100Pixie is a voice actor, cabaret performer & slam poet From the Blue Mountains in NSW.

She enjoys writing short fiction, plays for radio and stage as well as her own brand of weird poetry.

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david whitaker 200David Whitaker is originally from the UK though has travelled around a bit and now resides in India. He has a degree in Journalism, however decided that as he’s always preferred making things up it should ultimately become a resource rather than a profession.

His stories, covering everything from sci-fi to philosophy, have been published across the globe and links to each can be found at <wordsbydavid.com>

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mark english 100Mark is an astrophysicist and space scientist who worked on the Cassini/Huygens mission to Saturn. Following this he worked in computer consultancy, engineering, and high energy research (with a stint at the JET Fusion Torus).

All this science hasn't damped his love of fantasy and science fiction. It has, however, ruined his enjoyment of rainbows, colourful flames on romantic log fires, and rings around the moon. He has previously been published in Stupefying Stories Showcase, Everyday Fiction, Escape Pod, Perihelion and also on AntipodeanSF where he is part of the narration team.

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SF News

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Lillicat Releases "A Betrayal and Other Stories" by Brian Biswas

Lillicat Publications has relased AntiSF contributor Brian Biswas's new story collection "A Betrayal And Other Stories", now available at Smashwords and Amazon. <Find Out More>

Meerkat To Publish Eugen M. Bacon's "A Woman's Choice"

Meerkat Press has acquired AntiSF contributor Eugen M. Bacon's literary speculative novel "A Woman's Choice" for publication in 2019. Go Eugen! <Read More>

 

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2018 Aurealis Awards Open

2018 Aurealis Awards overseers the Continuum Foundation (ConFound) announces that the 2018 Aurealis Awards are now open for entries.

The Aurealis Awards, Australia’s premier awards for speculative fiction, are for works created by an Australian citizen or permanent resident, and published for the first time between 1 January 2018 and 31 December 2018.

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Continuum XIV: Conjugation. Melbourne’s SF Convention. 8th – 11th June, 2018. More information: <http://www.continuum.org.au/>.

Conflux 14 - The Unconventional Hero — Vibe Hotel, 1 Rogan Street, Canberra Airport ACT 2609. 29/09/2018 - 01/10/2018. More Information: <https//conflux.org.au>. AntipodeanSF will be at Conflux 14!

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