The Ethical Committee by Ray Blank

by


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“Ask the subject to come in.”

A thud came from the other end of the line, like the phone had been dropped. “Oh. Sorry. Lydia’s gone outside. I mean, Ms Williams has gone outside. For a cigarette. I told her it was okay. I didn’t think you’d want her so soon.”

“Lydia, eh? You’re on first name terms?” Fromm did not approve.

“Yes Doctor. She’s very chatty. Possibly she’s compensating, you know, for her… thingy.”

Fromm scowled, though nobody saw his expression. “Maybe so.” The assistant was not expected to familiarize himself with the subjects. That was Fromm’s job, along with his committee. “Which way did Ms Williams go?” This was a rare opportunity, for five minutes away from his colleagues. Though they chided Fromm for smoking, they were too liberal to criticize the lifestyle choices of a subject. Subjects were pitied, and then instructed.

SciPhiSeperator

Fromm felt no pity. The subjects were just people, as prone to misfortune and folly as everyone else. A lack of empathy was an advantage, in his role. Feelings led to bad decisions, and caused work to slip behind schedule. He rose from his seat, announcing he would “stretch his legs” and bring the subject to them. Balaj snorted at the turn of phrase, then quickly covered her face with her hand, as if to catch the sound before anyone heard it. Fromm was not offended; he smiled at the unintended irony. His organic legs had been amputated decades ago, as everyone knew. The mechanical substitutes had no need to be exercised, though they did require regular servicing.

SciPhiSeperator

Fromm had once been a sprinter, and a determined competitor, though not good enough to complete 100 meters in less than 10 seconds. So he had his legs replaced, to experience what he had been missing. Barred from major tournaments, he campaigned for the reformed Olympic movement, demanding everyone be allowed to participate, irrespective of genetic, mechanical or chemical modification. Whilst Fromm had been a decent athlete and an average doctor, his speeches drew acclaim, and he floored opponents with the force of his rhetoric. “We possess the wealth, and technology, to make everyone better. We’ve defeated cancer, ended malaria, beaten Alzheimer’s and more. We’ve learned to fix spinal injuries, to cure color-blindness, to prevent obesity. Medical science gives freely, and generously, to all. In contrast, nature is not a fan of equality; she treats some well, others poorly. The gifts of birth are a lottery. Why punish anyone, for aspiring to be more? Why turn their bodies into prisons, limiting their potential? That kind of thinking is old-fashioned, reactionary, fascistic. There is no nature, other than that we make for ourselves. We must free everyone, to be all they want to be.”

SciPhiSeperator

And so Fromm turned from minor sportsman, to minor activist, to minor politician, to chairman of a minor committee. In the midst of all that, there had been little time to practice medicine, or run races. His enemies had soon halted his political rise. Being shunted into this job was meant as compensation. Fromm was content. He had made his choices, and did what he could to make the world better. And if he chose to smoke, and so damaged himself, his habits were tolerated, and there was always the option of having a lung replaced. His status would even help him jump the queue for surgery.

SciPhiSeperator

Balaj recomposed herself, and returned to flicking through the dossier on the subject. That was a poor sign: the didactic businesswoman had failed to do her homework. Meanwhile, Silvestre gazed out of the window. He ignored Fromm so perfectly that a stranger might think Silvestre was in a trance, or deaf, not that anyone was deaf any more. Fromm knew Silvestre was listening; feigning disengagement was part of his act. Humorless, Silvestre was the best politician amongst them. Professional philosophers cannot expect handsome remuneration, and Silvestre badly needed his committeeman’s salary. Fromm placed his hand on the back of Silvestre’s chair as he stepped around it, nudging it slightly, hoping this would disturb the philosopher. There was the briefest of knocks at the door; it opened before Fromm could reach for it. The assistant sailed in, hesitating only when he saw Fromm. The subject, Lydia Williams, followed. It was obvious who she was, from her deformity, and because she carried the letter that had ‘invited’ attendance. Using paper for messages was anachronistic and expensive, but the physical medium seemed appropriate for the formality of the committee’s work. Williams clutched the letter in both hands; its many creases revealed how often she had handled it.

SciPhiSeperator

Fromm had missed his opportunity, which annoyed him. Nevertheless, he smiled at Williams, and gesticulated across the mahogany table, to the place where she should sit. The committee occupied a chamber in the grand old buildings of a former university, made defunct by the virtualization of education. All sorts of bureaucratic entities now inhabited its decaying shell, multiplying in the shadows of its richly furnished interior. Whilst the committee members sank into red leather, Williams plonked herself on the green plastic of a folding chair. The scavengers had picked the best loot for themselves. Leftovers were meager.

SciPhiSeperator

Returning to his seat, Fromm glanced left and right, checking that Balaj and Silvestre were ready. Silvestre avoided eye contact, as ever. Balaj tapped upon the table, impatient to proceed. Williams was the last item on today’s agenda. Fromm clasped his hands together. “Let’s begin, shall we? Ms Williams, I should start by introducing this committee, and explaining what we’re here to do.”

“I think I understand already. You’re going to force me to have an operation I don’t want. It’s easier to justify your decisions if you pretend to listen to me first.”

SciPhiSeperator

It was a shame that Fromm had not spoken to Williams beforehand. She would have benefited from his advice. Williams was right, though it helped if everyone played the game. The chances of a subject influencing the committee were slight, but antagonism hardened opinions. “Well, Ms Williams… may I call you Lydia?”

“No. I think you should call me Ms Williams. It’s not like we’re here to make friends.”

“Very well, Ms Williams, I am Dr. Fromm. I’m chairman of the Medical Intervention Ethics Committee representing the Northeastern region. To my left is Mrs. Balaj, a successful entrepreneur who founded several companies that supply medical services, and on my right is Dr. Silvestre–a doctor of philosophy, not a doctor of medicine like me. The three of us have been asked to make a decision. In some circumstances, a medical professional will refer a case to us, where they believe there’s a demonstrable need for intervention, but where they lack the necessary consent. As I’m sure you appreciate, there are times when religious beliefs, strongly held opinions, things like that, lead individuals to refuse treatment. This committee reviews the cases forwarded to us, and decides if there is a reason to impose treatment. In some cases we must act urgently, but that’s not the situation here. In cases like yours, Ms Williams, we’re very keen to fully understand your point of view, before we make any decisions. Is that all clear?”

Williams crumpled the letter into her jacket pocket. She fiddled with a button on her blouse, and was silent for a while. “You didn’t tell me anything I didn’t know already, but I suppose it was clear enough.”

SciPhiSeperator

Balaj spoke up. After working on several thousand cases together, they always granted her the first question. “Ms Williams, our notes say you’ve been offered the procedure on twelve different occasions, and that you turned it down each time. Would you say you understand what the procedure involves, and its benefits?”

“I know what the doctors want to do. I don’t see any benefit in doing it.”

“But you understand the procedure is risk free, and that it would perfectly correct your… your malady.”

“There’s nothing wrong with me. I don’t need correction.”

Balaj shuffled in her chair, uncomfortably.

SciPhiSeperator

Silvestre leaned forward, appearing interested. This was unusual for him. Normally he only spoke near the end of proceedings, when he would reel off his list of questions. This time, he adopted his best impression of a caring person, seeking to give comfort and reassurance. “We’re getting off on the wrong foot. Lydia, we appreciate your point of view. I don’t know you personally, but the sincerity of your emotion is obvious. There’s nothing wrong with you. We’re more concerned about other people, how they react when they meet you. Some people can be cruel–they’re fearful, or superstitious. The unfamiliar makes them anxious, prompts them to do hurtful things. I’m sure you know all this from first-hand experience. You stand out in a crowd. It’s perfectly understandable that you don’t want to change, merely to suit others. But we have to consider what’s best for everybody in society, both you and the people you encounter. We want to hear whether you suffer any abuse, any suspicion, any unpleasantness from other people, and if you do, whether this causes any distress, to you or them. You can understand why we’ve been asked to consider that.” Silvestre then leaned back, turning so still and quiet that he almost disappeared into his chair.

SciPhiSeperator

“There’s nothing wrong with me. I’m fine the way I am.” And then her silence was like stone. The assistant had said Williams was chatty. Evidently she had no desire to converse with them.


SciPhiSeperator

Fromm needed to inject some rigor into proceedings. “Ms Williams, at the time of your birth, one in 700 was born with your condition. Thanks to various advances, that proportion has fallen significantly, but millions of children still need surgery every year. Because of the impoverished facilities at the time of your birth, you didn’t receive the quality of care that you’d automatically receive, if you were born today. But we can address that now, and whilst the procedure is a tiny bit more complicated for an adult, it’s still very simple. In short, when parents have the option, they always give consent to operate on their child; they want the medics to do the best job they can. Your doctor did the best job he could, but it’s not good by modern standards. Your circumstances are unusual, in that you’ve reached adulthood without further remedial surgery. We think you’re unique–the records show there isn’t another adult alive today, who might benefit from this procedure.”

“You’re not asking a question.”

“Sorry, I’m getting to the point. People don’t generally make the same choice as you. They don’t choose it for their children, or for themselves. Can you explain to us, why you feel it’s in your interest to be different?”

“I like myself the way I am. The way people react to me, it tells me something about them. Within a few seconds, I can tell whether someone is good or not. I’d rather have that ability–to instantly see the truth of somebody’s character–than lose myself, to become just another face in the crowd.”

“Is that all there is to it? No other reasons to refuse surgery?”

“Does there need to be more?”

SciPhiSeperator

Balaj coughed. “Your medical files indicate some problems with your speech, and with your breathing.”

“I breathe through my mouth. That’s not so unusual.”

“And your speech?”

“Have you noticed any problems with my speech?”

“They say you can’t roll your r’s, that you gave up learning languages at school because of problems with pronunciation, that you volunteered for speech therapy classes, but stopped attending soon after.”

“I didn’t go because it was a waste of time. I don’t have any problems being understood.”

Balaj smiled thinly. “To r-r-roll your r-r-r’s would be a r-r-real pleasure, don’t you think?”

“No, I don’t,” said Lydia, though no reply had been expected.

SciPhiSeperator

Fromm looked at Balaj. Balaj smoothed the back of her hair. That was how she signaled she was done. It was already clear which way Balaj would vote; she had barely given Williams a chance. The committee’s decision now depended on the inscrutable Silvestre. Fromm needed to delay, giving Silvestre time to mull. “You’re single?”

“I am, at present. I don’t see what that has to do with anything.”

“Never married?”

“Don’t want to be. You’ve obviously seen my records, and know I’m not married, so why ask?”

“Do you think your relationships have been affected by how you look?”

“I think I look fine. I’ve had plenty of partners who felt the same way.”

“Have there been occasions when your appearance has prompted hostility?”

“From a lover? No.”

“From people in general?”

“You shouldn’t blame me for how others choose to behave. Punish them, not me.”

“We’re not seeking to apportion blame. We just want to know about instances where others reacted negatively to you.”

“I can’t recall.”

SciPhiSeperator

Balaj was growing impatient. “Come, come. A string of incidents are listed in your file. You’ve been reported to the police on four or five occasions. Each time it seems you’d done nothing wrong–you were picked upon as an easy scapegoat, because of your disability.”

“It’s not a disability. Nobody’s disabled these days, not really. I’m as able as anybody else.”

“Except for not rolling your r’s.”

“I wouldn’t call that a disability.”

“Being the victim of prejudice is a disability, hampering what you can do in life. There was a time when people were more… tolerant of someone like you. Now it’s a lot harder to expect tolerance, when people don’t see a need for it, when it’s so rare to encounter someone like you.”

SciPhiSeperator

Fromm rested his chin on his hand, covering his mouth. Underneath, he grimaced at Silvestre. The philosopher should hurry up and speak. Balaj was a write-off, too dogmatic to change her mind. She was now provoking Williams instead of trying to glean any useful information. Everything depended on Silvestre, but he sat motionless, eyes closed, like he was asleep.

SciPhiSeperator

“I’m not disabled,” reiterated Williams. “I was born with a cleft palate. It was stitched up, when I was young. End of story. Everything healed well enough, though you can still see a scar. I’m used to the way I look. I like the face I see in the mirror.”

Balaj would not rest. “Some of the incidents, involving the police, were described as having a political nature.”

“I’m entitled to free speech, even if I can’t roll my r’s.”

“There’s a suggestion you actually want to be scarred, in order to make a point about disability, and the values of our society.”

“I’m not disabled. If anything, I’m the opposite. I’m able to do more.”

“How so?” asked Fromm.

“Because I’m liberated from conformity.”

SciPhiSeperator

Fromm tried to hog the conversation, waiting for Silvestre to finally stir himself. That was preferable to allowing Balaj to continue her sniping. But there was no way around the topic. As they talked, Balaj continued to skim through Williams’ dossier. The evidence it contained was strong. Williams was socially unpopular, partly because of her appearance, partly because of her radical views. She had friends, and lovers, but they seemed as politically extreme as her. A generous person would describe her acquaintances as exotic. Someone else might call them freaks.

SciPhiSeperator

At long last, Silvestre leaned forward again. “I have a few, brief questions, if I may?”

“Go ahead.”

“You’ve had laser eye surgery. Why was that?”

“To see things clearly. Why else?”

“You could have worn glasses, like you did in your teens. In photos, your spectacles looked rather lop-sided. I imagine you didn’t like wearing them. Is it fair to assume you had eye surgery for cosmetic reasons, amongst others?”

Williams shook her head. The gesture lacked conviction.

“Another question. If you had a daughter–you understand your children will have an elevated risk of sharing your congenital deformity–and the doctors offered a choice, between surgery that left no scars, or the quality of surgery that you received as a child, which would you choose for your daughter?”

Williams baulked. After a long silence, she muttered: “I’m not going to have children, so the question doesn’t count.”

“It’s a hypothetical question, Ms Williams. I’d be grateful for an answer.”

Williams was impassive. She did not speak.

“Very well,” continued Silvestre. “Then I’ll only ask one more thing. The costs, and risks, of this operation are negligible.” He turned in his chair, toward Fromm and Balaj. “But maybe we’re looking at this the wrong way. Ms Williams sees no reason to change. She’d have the discomfort of going through the procedure, and whilst there’d be no financial cost, she’d have to give her time.” Silvestre turned again, looking Williams squarely in the eyes. “What if we looked at positive incentives to undergo surgery? Ms Williams, if we offered 500 dollars, would you reconsider? Think of it as compensation, for your time and trouble.”

SciPhiSeperator

That was an unexpected gambit from Silvestre. The committee had a small budget to encourage acquiescence, but it was rare to offer such a brazen bribe.

“There’s no amount of money you could pay me, which would make me want to change.”

SciPhiSeperator

Williams’ intransigence had effectively ended the conversation. But Fromm still had one hope. “Ms Williams, I know it’s an inconvenience, but would you mind waiting outside for a few minutes?”

“You want me to wait outside?”

“Yes, for ten minutes, at most.”

“I don’t see why. You’ve made up your minds already.”

“Please. We need to confer. Once we’ve done that, there may be other options we can put to you.”

“Options? What options?”

“The committee needs to discuss that first, if you don’t mind. It’ll only be ten minutes, I promise. You could go for a cigarette, if you wanted–there’s a courtyard if you turn to your…”

“I know where it is.”

“…I’ll come to find you shortly.”

It was a long shot. Every subject wanted to escape the committee as soon as they could. They preferred to delay the inevitable, forcing bad news to be sent in the form of another letter. Authority was unbearable, when it spoke face to face. But if Fromm could just persuade Williams to stay…

“Okay. Ten minutes. I’ll have a cigarette. At least I’m still free to do that.”

SciPhiSeperator

When Williams had left, Silvestre turned to Fromm ponderously. “I don’t see what we need to confer about. She’s obviously ideological. There’s no other reason to refuse treatment. I’m surprised nobody referred her before now. She may not like it, but she’ll have to be made to fit in, for the sake of everyone who looks at her.”

Balaj shuddered theatrically. “Yes. Can you imagine wanting to look like that? She’d be a naturally pretty girl, if it wasn’t for that monstrosity on her upper lip. How does she cope, given the way it must affect people? If she were a man, she could get away with growing a moustache, but it’s impossible not to look at it, on a woman. There’s nothing to discuss here. Rules are rules, and the rules in this case are straightforward.”

Fromm knew it was futile, but he had to try. “They’re guidelines, not rules. As chairman, it’s my duty to reiterate how much discretion we have, when interpreting those guidelines. For myself, I’m wondering why we don’t let this one slide. In the end, the treatment costs money, which could be better spent elsewhere. She obviously wants to be the way she is, so why bother?”

“Ms Williams needs the surgery,” asserted Silvestre. “She causes suffering to others, walking around like that. Her psych evaluation indicates that she’s suffered a lot too. That’s the likeliest explanation for why she’s so stubborn. One doesn’t need to be an expert to see the truth of that.”

“I agree,” chimed Balaj. “It’s vain to parade herself like that in public. She’s flaunting it. She wants to make a point. It’s unhealthy. Have you seen the data on her?” Balaj flicked through the files. It was clear from Williams’ comms traffic that she had fewer friends than average, and the ones she had were categorized as highly political, unusually extreme in character. Amongst her acquaintances there were all the indications of dysfunctional social behavior: fetishism, tattoos, unorthodox religious beliefs. Williams had sexual relations with both sexes, but no lasting relationships. Williams could maintain a job if away from the limelight, but she had niggled bosses, demanding roles unsuitable for someone like her. “In short, she’s bitter, and angry, and seems determined to make life difficult for herself and others. The sooner we change her, the sooner she’ll learn to fit in, and be happy. Anyway, what other options are there?”

Fromm raised an eyebrow. “We might persuade her by offering more cash, despite what she said.”

Balaj looked disdainful. “You only just said the treatment costs money. Should taxpayers reward her desire to cause trouble?”

Silvestre was equally adamant. “There’s nothing to be gained by pandering to this subject. I would’ve suggested going as high as a couple of thousand, but after that closing outburst, I don’t see why we should.”

SciPhiSeperator

So that was that. The Medical Intervention Ethics Committee had reached its decision. Fromm excused himself, saying he would tell the subject to go home, and to expect the decision in the mail. Better that, than risking an angry reaction now.

SciPhiSeperator

They exited the room together, though Fromm turned right whilst Balaj and Silvestre turned left. As Fromm turned the next corner, his stride lengthened, and he was instantly running, silently, down the empty corridor. It reminded him of being a child, racing down the hallways of his school, whenever the teachers’ backs were turned. Speed remained exciting, though when he found Williams, he felt relief rather than exhilaration. She was still there. He would not have blamed her for leaving. Williams sat in the sunny corner of an otherwise shady courtyard, upon on an old wooden bench, basking whilst she chugged at her cigarette. The location was important. Most visitors smoked outside the main doors, not daring to explore the building’s intimidating interior. Being inside, there were no cameras, no microphones, no chance of being snooped upon. Universities had supposedly been a bastion of free speech. Many of the bureaucrats dwelling in this carcass preferred more traditional, more controllable ways to document proceedings.

SciPhiSeperator

“Can I have a cigarette?” asked Fromm, crossing his legs as he sat beside Williams.

“You smoke?”

“Yes, I’m not such a conformist either.” He rapped his knuckle against his knee, comically, as if his leg was made of tin. There was no sound.

Williams opened her packet and held it towards Fromm. “I shouldn’t be giving you charity, after the way I’ve been treated. Though I read about your history. Before my time, but interesting. Why did you do that to yourself? How badly did you want to win?”

He took the cigarette, and lit it with his own lighter. “It wasn’t about winning. I wanted to see what it was like, to run faster. The experience wasn’t that different, to be truthful, though it spared me a lot of hard work in training.”

“At the cost of your legs.”

Fromm inhaled deeply. “It was a price I was happy to pay. I’ve never regretted it.”

“What happened to your legs, your real ones?”

“I didn’t ask. Dissected by anatomy students, I expect.”

“So what are these options, that you’re about to offer me?”

“The committee’s made its decision, and that leaves only one alternative. The decision is to make you undergo surgery, but there’s a way to evade its jurisdiction. I checked your records. Your mother lives outside our administrative region.”

“So what? You don’t know my mother. I’m not going to live with her, in order to escape your committee. And what difference will it make? The same medical records will follow me, wherever I go.”

“The authorities have files on everybody, that’s true, but things can still be misfiled, for a while. When you get home, change your address for correspondence. Within a week, the committee’s letter will be delivered to your current home, but you’ll say you never received it. When they follow up, and try to force you into hospital, you’ll appeal to the committee for the Southeastern region, which covers your mother’s address. They’re reasonable people; they won’t force you to do something like this. I can’t guarantee you’ll escape the system forever, but it’s a stay of execution.”

“Why would a man who chopped off his own legs, care about saving me from surgery? What do you want?”

Fromm chuckled as the smoke poured from his lungs. “I’m not asking for anything.”

“Seriously? What do you want? Money? Something else?” Williams crossed her legs as she spoke, toward Fromm.

“No.” Fromm was embarrassed by Williams’ insinuation. “It’s about making a choice for yourself. What you do with your body shouldn’t depend on what others think.”

“But isn’t it a fraud, giving the wrong address?”

Fromm laughed wistfully. “Yes, it is. A little white lie. I can’t see you having a problem with that, based on your past history.”

“Well, that’s it you see,” she said, as she started to pick at the skin beneath her nostril. “Those records are less accurate than you think.” As she spoke, flesh peeled from her lip, revealing that she had been wearing a prosthetic scar all along.

“What is this?”

“Rules are rules, and everyone must comply.”

Food for Thought

When healthcare is provided on a public basis, there often becomes an argument to influence people’s behavior for both moral and economic reasons. For example, discouraging smoking increases lifespan and quality of life whilst reducing costly spending on treatment of various cancers and diseases. There are gradations in how the various forms of influence interact with personal freedom. Influence may take the form of public information campaigns, of censorship of positive messages for certain products and behavior, and it may motivate the prohibition of behavior deemed undesirable. Meanwhile, improving technology reduces the costs of various medical procedures and creates new possibilities. If costs of medical procedures were low enough, could there be an economic and moral argument for healthcare providers to influence a person’s appearance? Psychology provides ample evidence that appearances affect both a person’s state of mind and how others treat them. If it was cheap to change a person’s appearance, and rare for people to retain their original ‘abnormalities’, would there be an economic and moral argument to improve social cohesion, increase worker productivity, and boost mental health by persuading, or even forcing someone to ‘correct’ what others perceive as deformities? And as such deformities become rarer, should we expect that there will be less tolerance to those who resist change?

About the Author

Ray Blank is one of several identities deployed by a confused cosmopolitan who splits his time between navigating the internet, wandering the countryside, and flying overseas to give talks about using the phone instead. The other identities are responsible for a book about flawed communications, a film about losing your mind in Arabia, and a website for professionals who worry about risk. The Ray Blank identity writes science fiction stories, and will progressively subjugate the others.

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Ray Blank
Ray Blank is the Executive Editor of Sci Phi Journal. You can learn (a little) more about him here.

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