Bioethics futures: tell us a story
We got a great response when we first published it, one year ago, with a number of people giving us some good ideas for its format and content. (Not forgetting the song entries, of course.)
As we launch the new version, we’d like to hear from you again, in three ways: tell us what you think of it; tell us of any new topics that we should include; and tell us a story.
Regarding topics to be included, we’re looking for issues that fit our selection criteria:
- That they involve or relate to new developments in biological or medical research;
- That they are matters of public or policy concern;
- That they raise new ethical issues, or challenge existing norms; and
- That the Council can make a distinctive contribution, having a timely impact.
Some topics are included for the sake of completeness (e.g. assisted dying), and might tangentially be addressed in other projects, but are unlikely to be the topic of specific consideration unless we see new research developments. In any event, let us know of anything that you think will be key challenges in the coming years.
We’d love to hear your short stories - pick one topic from each of the five domains, and put them together in piece of fiction of around 500 words. Post them into the comments box below, and we’ll think of how we might reward our favourite entries.
Here’s one to start us off – Lori’s Choice.
“Hi Lori. You have an email from The Repro Clinic. I think it’s urgent.”
The disembodied voice startled Lori out of one of her few moments of calm. “OK, Max,” she said, “remind me in 20 minutes.”
“Will do, Lori.”
Lori finished slicing the potatoes, put down her knife, raised her head and actively sighed. She felt that she should finish preparing dinner before she looked up her results from the clinic, otherwise it wouldn’t get done at all. She felt irritated with Max for having disturbed her now. Max worked out of a chip implanted against Lori’s skull just behind her left ear. It had only been in place for two weeks, and still Lori couldn’t work out whether she heard Max’s voice, or whether she just thought it. She also wished she had paid extra for the emotional intelligence plug-in. Max needed it.
She set the meat printer at ‘ground beef, medium fat, 350g’, and switched it on. Low fat is all very well, but not if you want a decent moussaka. That would take ten minutes. Ten minutes of peak anxiety.
“Hey, Max. Call Kerry.”
“Hi Lori, all OK?” It was Kerry.
“Yeah, yeah, fine. Max tells me I have an email just arrived from the clinic.”
“So what does it say? How many eggs are good to go?”
“Well I don’t know yet, I haven’t read it. I just wanted to talk around it again.”
“Lori, we’ve been around this plenty. Keep it simple – take the best eggs, get the best embryos, choose the best profiles, bingo! We got the best kids.”
“Well, I know, that’s the routine, but… whether we should choose at all. Whether we should do it at all. I’m not young.”
“Lori – we’ll only be 80 when the kids get to 18. Just keep taking the Telomerics. Don’t follow your parents’ route.”
“Oh, don’t start that again, Kerry. They felt the drugs were still experimental. The trials weren’t even licensed – all that people-powered so-called research. It’s all very well if you’ve got the money. Anyway, they chose a natural life course. That’s what they wanted, and it’s not for you or anyone to say they were wrong.”
“Well, I know what I’m doing, and it certainly doesn’t involve stopping at double figures. This is the new natural. Listen, let’s just get on with it. These are your last eggs, so let’s use them well.”
Lori wanted to hang up, but momentarily she forgot how. She looked at her hand as if to switch off her phone. She hadn’t used one in over five years, but she still missed it. She longed for simplicity. She wanted fewer choices.
“I’ll talk to you later, Kerry.” Her voice was flat. “Max, switch off and sleep.”
“OK Lori, talk to you soon.” Max’s voice was full of fake bonhomie. I’ll download the plug-in this evening, she thought.
Lori took the meat from the printer, layered it in the dish and set the oven to 40 minutes.
She looked up her email account, and opened the message from the Repro Clinic.
The key line was simple and unadorned. “Number of eggs suitable for proceeding to fertilisation: one.”
Lori smiled grimly to herself. “Well, I wanted fewer choices.”
Costly truths, cheap lies
Health technologies and information consumption: do we want to reach citizen science or continue with the biomedical collectives?
"To be a scientist is to be naïve. We are so focused in our search for truth, we fail to consider how few actually wants us to find it. But it is always there, whether we see it or not, whether we choose to or not. The truth doesn't care about our needs or wants; it doesn't care about our governments, our ideologies, our religions. It will lie and wait for all time. And this, at last, is the gift of Chernobyl. When I once would fear the cost of truth, I now only ask – what is the cost of lies?" Final phrase of the fifth and last episode of Chernobyl, HBO’s tv series – quoted by Valery Legasov’s character voice – the chief physicist of the soviet delegation to contain and investigate the 1986 accident in Pripyat in the USSR, then.
I pressed pause/play and rewind exhaustively to be able to capture all the content of this last monologue transcribed above ipsis litteris, while I observed the details of that empty road advancing through extremely tall trees of the Russian steppes in this last sequence that plays repeatedly on the television. This way works the mind of a researcher: curiously and repeatedly observing patterns and looking for clues – scientific evidence – of something that might happen systematically, amenable of being replicated under the same conditions, or that stands out for its notorious novelty capable of causing that 'weirdness' feeling until ... Eureka!
I remembered the truth discovered in a dream by Dostoyevsky's ridiculous man (another Russian, landless occupant of brain-hearts like mine): 'the' truth that takes the suicidal narrator-character out of a dream – a ridiculous life – and brings him back to the world of the living is the inexorable presence of beauty and love in the world. He comes back to spread this truth, after all, what is the use of knowing it if it is not to remain in the world to proclaim it? If we go back to the first sequence of the Chernobyl tv series, we remember that Legasov's character commits suicide right after recording and 'hiding' cassette tapes narrating the real life story – not the cheap lie the USSR government told the world.
The truth is not scientifically replicable evidence in laboratory benches, much less in the controlled way in samples large enough to achieve a standard deviation that characterises any statistically significant 'p' about such an association with the reach of a supposed truth, as dictated by the randomized clinical trials’ industry – the ‘biomedical collectives’ – that seeks scientific evidence on cost-effectiveness and safety. Security… is it so? It is said that real world evidence will forcefully bring, thanks to artificial intelligence, the real(ity) scientific truth about all of us. But neither does the truth lie in an algorithm that, by reading electronic medical records of hundreds of thousands of suicidal patients, is supposed to be able to establish a 'cut-off point' about what would be the biological (genetic and epigenetic), psycho-behavioural, socio-cultural, political-economic or even ethical-regulatory barriers and facilitators that signal red flags of warning in these large databases of real life that are open for the human analysis and validation of the automated activity created by data and information science. Even if we did, we still wouldn't know anything about such truth, but a lot about how to repeat, in a controlled way, the ridiculous experience of the Dostoyevsky’s man, or to look for him in the crowd, without ever really knowing if we have reached it by not knowing such ‘blessed’ truth… Legasov tells us the truth about Chernobyl on the tv series because there was affection, but it cost him his life!
What do we develop scientific knowledge and produce new technologies for? To tell you some truth about who we are, where we came from, why we are here, and where we are going – or where we can go, even if it is in the same direction we came from? We produce knowledge and technologies as comfort pills to a vain reality of daily massacre, detachment, consumption and cultural synaesthesia about the fact that we are all heading towards the same end. After all, living is not just surviving! We live among cheap lies, guesswork, government actions fostered solely by political-economic interests, ideologies, religion or individual needs and desires to reach unconvincing conclusions or based on scientific evidence about everything that a privileged group of people professionally trained in verifying our reality cannot, or are not allowed to, for lack of better training in communication, inform about costly truths – paid for by the productive silence of those who observe everything in our behaviour and in our relations with each other, with these technologies, and with all other species that hang alive in this environment called Avenida Paulista, São Paulo, Brazil, Latin America (or would it be South America, choose the one that suits you best), America, Earth, Solar System, Galaxies, Universe ... Did you start seeing stars in a pitch black dark space that would make any black hole envious?
Let's go back to Earth, to you ... When was the last time you got sick? Was it a virus? Or did you get measles, thanks to supporters of the anti-vaccine movement? How much would you pay for health technology that can make you immune to any type of infectious disease? You're a millennial, aren't you? If not, you are a baby-boomer, live with millennials and knows what I'm talking about. Cross-fit training is 'done’, but you would love to practice sports beyond Ibiraquera, after all, why so much money spent on sports consulting companies, food, ('branded') equipment, coaching and ever more ('brand') races for 5km, 10km, women night runs, half-marathons, Ironman… How much would you pay for a technology that would help you run faster, jump higher, cycle for longer? Suddenly, you became an amateur athlete, or even: a digital fitness influencer! Cashing in loads of money!… And lots of perks, in addition to some privileges in the eternal #gratitude. You could purchase a precision medicine follow-up kit that would help you postpone our inevitable end (i.e. for those who forget: death) to continue your 22-year-old athlete performance. Have you ever thought about it? One of the wizards of desire around Brazil, Walter Longo presents us with an interesting reflection in an interview with Luiz Felipe Pondé, at Democracia da Teia (Democracy in the Web), about how we produce and use technologies. He also tells us about ‘extelligence’, consumption and ‘media age’: apparently, we have only recently got out of the middle age, with the revolution in the way we communicate today. It’s no accident that I watched this interview due to a notification from my YouTube profile that I receive on my smartphone and via Gmail whenever there is some new content on the channels I subscribe about technology, politics, behaviour and media, or via the my social media 'algorithm'. Do you think this has nothing to do with Health$cience4.0?
There are no coincidences, nowadays: there are algorithms reading and hearing everything about your life and that of those with whom you have established relationships with, in person or virtually, from your smartphone (the name says it all, right? Silly for those who have not realised it yet) and other social media and Internet connectedness applications and softwares. The key is communication. On the same day that I watched this Democracia na Teia interview, my phone's Android suggested me to further this reflection with the concept of collective intelligence coined by the philosopher Pierre Levy by recommending his interview (and videos) to Folha de São Paulo on 09/09/2019, just before an event that brought him back to Brazil to speak again on the topic for Fronteiras do Pensamento (Thought Frontiers), in anticipation of his book on IEML (Information Economy MetaLanguage) – something he hopes only someone very eager for 'costly truths' is waiting to read. After all, life is bigger than its explanation but, if we knew how to communicate better across generations and cultures, maybe (may-be) something more significant could emerge from this sea of soulless photos full of ha$htag$ that flood our timeline on digital social media. Anyone thinking this is something that only Zuckerberg, Dr. Google and the owner of 23andMe want from us?
The Wellcome Trust started a project called Wellcome Photography Prize in 2019 to reward professional photographers, students or amateurs who can bring visual narratives that tell us compelling stories about health challenges today, from the perspective of those who experience them on daily basis. If you think that only issues on epidemics like the Zyka-virus in Brazil have arisen or about how women who have had a mastectomy resort to tattoos as a way of accepting their new mutilated body, you need to review your concepts of global health – or 'glocal' – or even about what luxury and health needs mean today... Health institutions for the elderly in several countries have started to experience 'Zora, the caregiver robot' as, according to Joanne Liu, international president of Médicins Sans Frontières “we have an aging population across the world and we don’t know yet how to tackle that. Maybe, in the future, our only companion would be a robot, and so I think it speaks to how we are, as a society developing”. Well, whether you are a millennial, baby-boomer or any of those other generations invented by advertising and marketing, I am sure you are curious to check at least which countries are testing Zora – spoiler-alert! – if it would be useful for children, if some type of human supervision is needed, the value of this type of technology and if it would be used only for supervised care, or if we would be creating new forms of relationship with day-to-day technologies . After all, according to one of the users' granddaughters: “My grandmamma was an extraordinary doctor and one of the cleverest people. During the last years before she passed-away we spoke online every day. I remember our online call (Senegal-Crimea) and she told that her iPad was the best device for her during these last years because we could stay in touch all the time. Of course, technologies can’t create love by themselves, and I am scared by technologies as a lot of us are, but sometimes technologies really can connect us together”.
Still thinking that health technologies are not about communication and consumption? Think again!
We will discuss these and other issues regarding the Health$ciences4.0 around Brazil at the Laboratory of Politics, Behaviour and Media (Labô - the think-tank at Pontifical Catholic University Sao Paulo) starting 5 March 2020.
Light. Kay blinked in the harsh light. Soon the hatch opened and a food tray emerged; a plastic tray with assorted dollops of plastic food. Kay picked at the food. Didn’t know how long she had been here. Nor why. Was it only hours ago - a day at most - that she had been standing at her workpod in the data plant. Her job was to select sensitive data, to make connections. Typed as high creativity, with exceptional emotional intelligence, she had - of course - been forced to undergo a complete genetic, psych, and neuro scan. She knew that she would be constantly risk-evaluated, but that part was never revealed. The corporations were assiduous in their selections, tireless in their efforts to weed out undesirables. None more undesirable than the hackers who siphoned off valuable data, selling it via neurolink on the darknet.
As she paddled through the daily tide of images and information Kay was permanently monitored: cardio, and iris tracking. Everything linked to the AI. And it was the AI which had flagged up an aberration; an anaomalous tic, or emotional flutter, invisible to the human eye. Without warning security had shut down her workstation and ordered her to follow. CorpSec had rights over their employees to detain monitor and interrogate as necessary.
Now Kay was curled up on a spongy mattress that served as a bed, the taste of bad food in her mouth. She jolted upright when the steel door slid open. A guard entered and gestured for her to stand. Then, one guard in front, and one behind, they walked her down the corridor. Towards the lift. Towards the notorious Level Five: Veritas. The place where all that was hidden was brought to light.
Lies. Deceit. Kay couldn’t imagine what it must have been like, living in a world of spoken falsehoods. A time when thoughts could rest undisturbed in the darkness of the human mind. That was before we had become transparent. Before the corporations shone a cleansing light through the human soul. The objective now was merely to acquiesce, to be overtly benign.
Kay bit her lip in a display of nerves. If she lost her work certificate she’d be ejected from the corporate sphere. Forced to work at the recycler or the wet market. She turned as an Interrogator entered, grey suit, spectacles, not unlike a picture she had seen of a ‘dentist’ from the old times. He beckoned her to sit in the examination chair. It reclined, the room lights darkening as the QIU (the Quantum Interference Unit, commonly known as a ‘Q’) was lowered over her head and eyes.
Then light. Subliminal images in quick rotation, too fast to discern. The ‘Q’ began its work, measuring base-rate neural responses, mapping the rapid fire of neurons, the bloom of axons across the cortex. The frontier of privacy had now moved inside the human mind. There was no longer a barrier between exterior and interior, merely a permeable meniscus. The ‘Q’ probed far into the recesses of the mind. Beginning with the visual cortex. And working deeper, into the basal depths.
The examination was not unpleasant. And suddenly it was over. The ‘Q’ was withdrawn, and the lights buzzed on, leaving Kay blinking. The interrogator motioned for her to wait in an anteroom to be escorted back to her work-station. She had passed! Kay staunched any display of emotion. Long ago she had learned to control her body language. Not only that. Once in the elevator she allowed herself to experience a brief memory. The neuro-feedback training that all corporate hackers undertook. Learning to control the alpha waves, learning to bury those memories that must remain hidden, layering them under benign imagos. She smiled, inside.
Thanks, Karen. Nice story.
The last thing one would want, right now, would be to be sent to work in the 'wet market'!
Day in, day out, year in, year out, the sun sets over the fields of her farm. And like every evening she stands on the porch outside her farmhouse, soaking up all the impressions, colours and lights. Soaking them up and casting them on canvas. Day in, day out, year in, year out – always the same motif.
And as she stands there, in her everyday evening, letting the day fade away, and giving free rein to her imagination, she falls into a state of benevolent brooding. About herself, her past decisions, what led her to this point in her life, and what the future still has to offer.
Grandchildren! Will she ever have any? Her daughter – after all, she is so focused on her career. Day in, day out, year in, year out, she sits in the same blue-lit laboratory and does her research, growing some kind of artificial brains. A lifetime dedicated to this strange task – poor thing. Ever her eggs had she frozen. Will she ever have children? Will I ever have grandchildren? Or is the plan put on ice, literally?
In the meantime, the sun has turned all red, as low as it has sunk, and gives the whole evening sky a warm atmosphere.
Oh, her daughter... Maybe she should call her up again, just to see how she’s doing. But one doesn’t want to disturb either. Besides, the Smartwatch on her wrist tells her that her daughter is all fine – the little researcher-emoji 👩🔬 is winking at her at regular intervals or throwing her a kiss. On the other side of their digital bond, a small farmer-emoji 👩🌾 appears on her daughter's wrist. With a tap of the finger, her daughter could even check her heartbeat and other ‘important medical data’ about her. What a crazy world! Nevertheless, in the end a phone call, let alone a face to face conversation can never be replaced by these small – however user-adapted – pictograms…
The shadows of some distant trees become longer and longer. The sun has almost disappeared behind the horizon. The fields, which were just now gleaming in all different shades of red, are now slowly desaturating into an allover-grey monochrome.
How is this supposed to go on? Day in day out, the same landscape, the same rhythm of life, the same questions in her head. Are there any changes at all – or is the world just always the same? Repeating itself on and on? Will tomorrow be the same as today? Next year like this one? The coming decade? If one could only slow down biological ageing, eliminate it for an indeterminate period of time... Then she could find out about that. She feels she could enjoy tomorrow. And the issue of grandchildren came much closer, too…
With fingers slightly shaky from the chill of the night, she melancholically finishes some last brushstrokes – just like the day, the year before –, lets her gaze wander over the now turned grey fields of her meat-grass farm and – as day’s last work – captions her painting: „No new thing under the sun #361“
I like the way that painting, like cooking, remains a pleasure unaffected by tech.
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