He’s mad that trusts in the tameness of a wolf

I am an obstetrician, and not a neuropsychiatrist, but I feel a definite uneasiness with the idea of messing with brains –especially from the inside. Talking at it, sure –maybe even tweaking it with medications- but it seems to me there is something… sacrosanct about its boundaries. Something akin to black-boxhood -or pregnant-wombhood, if you will– where we have a knowledge of its inputs and outputs, but the internal mechanisms still too complex and interdependent to be other than interrogated from without.

I suppose I have a fear of the unintended consequences that seem to dog science like afternoon shadows -a glut of caution born of reading about well-meaning enthusiasms in my own field. And yet, although I do not even pretend to such arcane knowledge as might tempt me to meddle with the innards of a clock let alone the complexities of a head, I do watch from afar, albeit through a glass darkly. And I am troubled.

My concern bubbled to the surface with a November 2017 article from Nature that I stumbled upon: https://www.nature.com/news/ai-controlled-brain-implants-for-mood-disorders-tested-in-people-1.23031 I recognize that the report is dated, and merely scratches the surface, but it hinted at things to come. The involvement of DARPA (the Defense Advanced Research Projects Agency of the U.S. military) did little to calm my fears, either –they had apparently ‘begun preliminary trials of ‘closed-loop’ brain implants that use algorithms to detect patterns associated with mood disorders. These devices can shock the brain back to a healthy state without input from a physician.’

‘The general approach —using a brain implant to deliver electric pulses that alter neural activity— is known as deep-brain stimulation. It is used to treat movement disorders such as Parkinson’s disease, but has been less successful when tested against mood disorders… The scientists behind the DARPA-funded projects say that their work might succeed where earlier attempts failed, because they have designed their brain implants specifically to treat mental illness — and to switch on only when needed.’

And how could the device know when to switch on and off? How could it even recognize the complex neural activity in mental illnesses? Well, apparently, an ‘electrical engineer Omid Sani of the University of Southern California in Los Angeles — who is working with Chang’s team [a neuroscientist at UCSF] — showed the first map of how mood is encoded in the brain over time. He and his colleagues worked with six people with epilepsy who had implanted electrodes, tracking their brain activity and moods in detail over the course of one to three weeks. By comparing the two types of information, the researchers could create an algorithm to ‘decode’ that person’s changing moods from their brain activity. Some broad patterns emerged, particularly in brain areas that have previously been associated with mood.’

Perhaps this might be the time to wonder if ‘broad patterns’ can adequately capture the complexities of any mood, let alone a dysphoric one. Another group, this time in Boston, is taking a slightly different approach: ‘Rather than detecting a particular mood or mental illness, they want to map the brain activity associated with behaviours that are present in multiple disorders — such as difficulties with concentration and empathy.’ If anything, that sounds even broader -more unlikely to specifically hit the neural bullseye. But, I know, I know –it’s early yet. The work is just beginning… And yet, if there ever was a methodology more susceptible to causing collateral damage, and unintended, unforeseeable consequences, or one that might fall more afoul of a hospital’s ethics committee, I can’t think of it.

For example, ‘One challenge with stimulating areas of the brain associated with mood … is the possibility of overcorrecting emotions to create extreme happiness that overwhelms all other feelings. Other ethical considerations arise from the fact that the algorithms used in closed-loop stimulation can tell the researchers about the person’s mood, beyond what may be visible from behaviour or facial expressions. While researchers won’t be able to read people’s minds, “we will have access to activity that encodes their feelings,” says  Alik Widge, a neuroengineer and psychiatrist at Harvard University in Cambridge, Massachusetts, and engineering director of the MGH [Massachusetts General Hospital] team.’ Great! I assume they’ve read Orwell, for some tips.

It’s one of the great conundrums of Science, though, isn’t it? When one stretches societal orthodoxy, and approaches the edge of the reigning ethical paradigm, how should one proceed? I don’t believe merely assuming that someone else, somewhere else, and sometime else will undoubtedly forge ahead with the same knowledge, is a sufficient reason to proceed. It seems to me that in the current climate of public scientific skepticism, it would be best to tread carefully. Science succeeds best when it is funded, fêted, and understood, not obscured by clouds of suspicion or plagued by doubt -not to mention mistrust. Just look at how genetically modified foods are regarded in many countries. Or vaccinations. Or climate change…

Of course, the rewards of successful and innovative procedures are great, but so is the damage if they fail. A promise broken is more noteworthy, more disconcerting, than a promise never made.

Time for a thought experiment. Suppose I’ve advertised myself as an expert in computer hardware and you come to me with particularly vexing problem that nobody else seemed to be able to fix. You tell me there is a semi-autobiographical novel about your life that you’d been writing in your spare time for years, stored somewhere inside your laptop that you can no longer access. Nothing was backed up elsewhere –you never thought it would be necessary- and now, of course, it’s too late for that. The computer won’t even work, and you’re desperate.

I have a cursory look at the model and the year, and assure you that I know enough about the mechanisms in the computer to get it working again.

So you come back in a couple of weeks to pick it up. “Were you able to fix it?” is the first thing you say when you come in the door.

I smile and nod my head slowly. Sagely. “It was tougher than I thought,” I say. “But I was finally able to get it running again.”

“Yes, but does it work? What about the contents? What about my novel…?”

I try to keep my expression neutral as befits an expert talking to someone who knows nothing about how complex the circuitry in a computer can be. “Well,” I explain, “It was really damaged, you know. I don’t know what you did to it… but a lot of it was beyond repair.”

“But…”

“But I managed to salvage quite a bit of the function. The word processor works now –you can continue writing your novel.”

You look at me with a puzzled expression. “I thought you said you could fix it -the area where my novel is…”

I smile and hand you back the computer. “I did fix it. You can write again -just like before.”

“All that information… all those stories… They’re gone?”

I nod pleasantly, the smile on my face broadening. “But without my work you wouldn’t have had them either, remember. I’ve given you the opportunity to write some more.”

“But… But was stored in there,” you say, pointing at the laptop in front of you on the counter. “How do I know who I am now?”

“You’re the person who has been given the chance to start again.”

Sometimes that’s enough, I suppose…

 

 

 

 

 

 

 

 

 

Advertisements

Noceboes? How Cute.

I have always been fascinated by neologisms –new words that substitute for more commonly used ones. They can be clever, rude, or just plain silly, but often their point is to get noticed –or perhaps draw attention to their inventors. There was a time –before social media, at least- when we used to applaud people like Shakespeare for turning nouns into verbs, or adjectives into more active participants. And it was a time when elders, if they forgot the word for which they were searching, would simply come up with a new one. Of course, they still do, but it is often  lost in the ebb and flow of media utterage (pardon the neologism). I have written about this before in another context, but the subject continues to intrigue me: https://musingsonretirementblog.com/2016/05/22/what-did-you-say/

This time, however, I was more interested in the clever contrast of nocebo with the word it was replacing, placebo, that was reported in an article in the CBC health news: http://www.cbc.ca/news/health/nocebo-effect-greater-expensive-drugs-1.4358664

I suspect we’re all acquainted with the placebo effect: the ability of a harmless, inactive substitute to have a beneficial effect if it is believed to be the treatment. Again, I have covered this in a previous essay: https://musingsonwomenshealth.com/2016/04/20/rethinking-placebos/

But there seems to be no end to our ability to fool ourselves, and the concept of ‘noceboes’ is yet another illustration. ‘The opposite of the placebo effect — perceived improvement when no active medicine is given — nocebo is the perception of negative side-effects from a benign “medication” in a blind trial.’

The article reports on a study published in the journal Science, which suggests that ‘Expensive medicines can seem to create worse side-effects than cheaper alternatives.’ This particular investigation ‘focused on the pain perceptions of patients who were treated with creams they believed had anti-itch properties but actually contained no active ingredients.’ And, as one could no doubt predict from the title of their publication, Nocebo effects can make you feel pain, ‘Though the scientists ensured the temperatures applied to the two creams were consistent, those who received the expensive cream rated their pain as nearly twice as intense as those who received the cheaper cream. The study suggested that patient expectations related to price can trigger brain responses resulting in higher perception of pain, said Alexandra Tinnermann, a co-author of the study and neuroscientist at University Medical Center Hamburg-Eppendorf.

‘Tinnermann’s team used a functional MRI scanner to identify areas along the spinal cord that were activated during participants’ experience of side-effects. They also pinpointed two brain regions that were more stimulated among participants who believed they received the expensive drug.’

The ethics of using placebos –tricks- is one thing, but what about those of choosing between several recognized and approved medications where the only difference is the price? On the surface, it might seem to be a saving for all concerned. If the data hold up in further studies, why prescribe new and probably higher cost medications, if they’re more likely to have side effects?

Unfortunately the very ethics that require medical practitioners to discuss the possible side effects of any medication, are also known to influence the experience. Knowledgeable patients report more side effects than those who, for whatever reasons, are blissfully unaware of what to expect. Perhaps it’s more a question of which of Pandora’s boxes the practitioner should open -a zero sum game, no matter.

I was sitting on a park bench in the shade of a tree one sunny summer day, trying to finish a book a friend had loaned to me. It wasn’t very interesting, despite her recommendations, and although I was determined to discover what she had liked about it, I found my mind looking for excuses to put it down. My ears soon found a distraction. Two little boys had abandoned their bikes on the  grass nearby and were engaging themselves in scaling the leafy tower of what I had assumed was my own special shade tree. Hidden by several bouquets of leaves fluttering gently in the afternoon breeze, I suppose they thought they were invisible in their private redoubt.

“Thought you were sick, Jay,” one of them said, as if he wondered if he was in danger of catching whatever Jay had.

“I’m on antibiotics, Jordan,” the other answered defensively.

They were silent for a few moments, although I could hear them grunting as they climbed ever higher.

“My mother doesn’t believe in them,” a voice, probably Jordan’s, said very firmly.

“Why?” was Jay’s surprised reply.

Jordan was silent for a moment, clearly trying to remember. “She says they can make you sick.” Even from my position far beneath them, I could almost feel Jordan’s italics.

“How?”

Another, grunt-filled silence as they switched branches. “She says they can make your skin go red…” He hesitated for a minute while he combed through his memory. “And give you… make you wanna throw up.”

Jay seemed to hesitate before answering. “Well, I’m not red or anything, but… uhmm, sometimes I do feel a little like throwing up, I guess. Anyway I have to go to the toilet a lot, so it’s hard to tell.”

“She says that’s what happens with them too, Jay. It’s why I just take vitamin pills.”

“My mother says those don’t usually work… People only think they do.” Jay felt a need to defend his antibiotics. “Mom says we imagine things sometimes…”

“Like what?” Jordan sounded sceptical. For a while, I could only hear the leaves rustling, so I wasn’t sure if they’d already climbed too high to hear.

“Like… Like that vitamins can keep us from getting sick.” I could hear one of them shifting somewhere above as a branch cracked. “And she says some people won’t take antibiotics because they’re afraid of, uhmm…” He hesitated, while he searched for the right word. “…the side-stuff.”

“You mean ‘side-defects’?” Jordan pronounced the words carefully, condescension fairly dripping from his words.

“Yeah. She says if they hear about the defects, they figure they’ll get them.”

“Well my mom says doctors have to tell people about them, though, Jay… It’s the law.” He added smugly.

Jay seemed to think about it for a second. “Then no wonder, eh?” he said, as if he finally understood.

“No wonder what?”

“No wonder people get ‘em,” Jay answered, triumphantly.

From the mouths of babes.

How Ethical is Ethical Compromise?

What to do with a minefield? Once it is there, is it sufficient to avoid it while we investigate and map it –mark it off as terra incognita- or must we act immediately to attempt to remove all mines even if we do not fully understand their distribution or destructive capabilities? Even if we may miss some and our initial enthusiasm was deemed naïve?

This is an admittedly inadequate metaphor when applied to ethics, to be sure, but in many ways is illustrative of the pitfalls of being too quick to judge; or, alternatively, of assuming there is only one approach –and that the one chosen is perforce the correct and appropriate one.

Unfortunately, majority opinion often quietly assumes the mantle of indisputability in a culture, no matter its importance or suitability elsewhere. And even to question the legitimacy of the assertion is to question the legitimacy of the social norms to which its members unconsciously adhere. It may not necessarily intend to negate them, or overtly dispute them, but by subjecting them to investigation, it may seem to disparage their sanctity.

It is difficult to step out of our societally condoned patterns of thought and our long-hallowed mores; it is troubling to observe customs that seem to violate what to us are ingrained standards of morality. It is difficult indeed, to accept that we may not be in sole possession of moral rectitude –that there may be alternate truths, alternate moralities, even alternate equally valid perspectives.

I raise this with regard to the increasing awareness and condemnation of female genital mutilation (FGM). To be clear from the start, I do not condone FGM nor feel that it should be perpetuated; indeed I have to confess that I have great difficulty viewing it as anything other than a culturally-imposed abomination -misogyny writ large. I was, however, intrigued by a paper published in the Journal of Medical Ethics that sought to assess the issue in a more critically constructive fashion than I have seen before: http://jme.bmj.com/content/early/2016/02/21/medethics-2014-102375.full  It is really a very thoughtful and enlightening paper and I would strongly suggest that it is worth reading –if only to learn more about FGM and its cultural significance stripped of any pre-loaded societal baggage.

I was impressed by several things in fact. They sought to classify the procedures in terms of degree, medical issues, the ethical underpinnings of FGM, cultural sensitivity, and whether or not any form of the procedure would constitute gender discrimination or the violation of human rights. I will let the reader judge how thoroughly these fields were covered, but caution against our usually self-imposed wall of confirmation-bias that often precludes a dispassionate consideration of views that don’t fully accord with what we ‘know’ to be the correct ones… http://www.cbc.ca/news/health/female-genital-mutilation-legal-1.3459379 -this brief article from the CBC is perhaps a more assimilable and balanced –albeit nuanced- summary of the arguments.

I suppose the issue is not so much whether the practice should ever be acceptable –although neonatal male circumcision seems to have made it through the gate- as whether by outlawing it, the procedure will be driven underground as seems to be happening currently. If it is so important to a culture –whether justified by mores, or religion- that there seems to be an imperative to have it performed to allow an individual’s acceptability to be confirmed in the community, then wouldn’t it be better to acknowledge this, but mitigate the harm?

The authors have attempted a classification of FGM into 5 categories, the first two of which are thought to have minimal if any permanent effects on the girl -no effects on sexual pleasure, functioning, or reproduction. And, of course, if accepted, could be done under an anaesthetic, rather than by test of courage. Its acceptance could serve to assuage the cultural imperatives while essentially eliminating the greater severity and mutilating effects of the more complicated forms of the practice. It would be an intermediate –and hopefully temporary- step on the road to complete elimination of the procedure.

To be sure, the objection raised is often the one of argumentum ad temperantiam –the fallacy of assuming that the truth –the resolution- can be found in the middle ground between the two conflicting opinions. The problem, of course, lies in the validity of the opposing claims. Should one really be looking for the middle ground between information and mis (or dis) information? Sometimes the distinction is easy, but sometimes it is the minefield I discussed above. Primum non nocere –first of all do no harm- is the guide. As the authors state: ‘… analysis of issues in medical ethics generally regards principles as being prima facie in nature, rather than absolute. Therefore, important emotional and social considerations can trump minor medical considerations.’ In fact, because of the extreme and negative connotations of the term female genital mutilation, the authors even propose an alternative, less pejorative name: FGA (female genital alteration).

Without trying to push the concept and its acceptance too strongly, let me quote the summary of their intent: ‘Since progress in reducing FGA procedures has been limited in states where they are endemic and the commitment of people from these cultures to these procedures has led to their persistence [even in] in states where they are legally discouraged, alternative approaches should be considered. To accommodate cultural beliefs while protecting the physical health of girls, we propose a compromise solution in which liberal states would legally permit de minimis [a level of risk too small to be of concern] FGA in recognition of its fulfilment of cultural and religious obligations, but would proscribe those forms of FGA that are dangerous or that produce significant sexual or reproductive dysfunction.’

Compromises are always difficult; no one gets all they want, and yet each gets something. I raise the issue of female genital mutilation/alteration mainly for information but also for discussion. Sometimes, we need to know something about what we oppose. Always, in fact…