Of thinking too precisely on the event

The right not to know -now there’s an interesting concept in today’s competition for instant news, ‘breaking stories’, and the ever present titillation of factoids. It seems almost counterintuitive -why would anyone choose not to know something? Surely knowledge trumps ignorance. Surely Hamlet’s timeless question ‘Whethertis nobler in the mind to suffer the slings and arrows of outrageous fortune or to take arms against a sea of troubles and by opposing, end them?’ has been answered in the modern era: it is better to know what hides behind the door than to turn one’s back… Or is that just naïve? Hopelessly romantic?

And yet, at least in Medicine, there is the potential struggle between beneficence -promoting and advocating for the well-being of others and autonomy -the right of someone to determine their own fate. And when the two are in conflict, there is an ethical dilemma.

But what about the right not to know something? Something that neither party had any reason to anticipate, and of which ignorance could be disastrous? Does the knowledgeable party have an obligation to inform the other, even if they were instructed not to? In everyday affairs, that seems an unlikely scenario, but an interesting article in Aeon by the writer Emily Willingham outlines some examples from medical research that probably cross the line: https://aeon.co/ideas/the-right-to-know-or-not-know-the-data-from-medical-research

A blood sample targeting cholesterol for example, might show another, seemingly unrelated abnormality. Should your doctor tell you about it, even though the cholesterol value was normal? Of course she should, you would assume. ‘But what if the finding turned up in samples donated for medical research instead of taken for medical testing? … [The] UK Biobank offers a case in point. When participants submit samples to be mined for genetic information, they agree to receive no individual feedback about the results, and formally waive their right to know…’ But that seems unethical, does it not? ‘The reality is that the ‘right’ thing to do about these competing rights to know and not know – and to tell what you do know – varies depending on who’s guiding the discussion. For example, a clinician ordering a test and finding something incidental but worrisome is already in a patient-doctor relationship with at least a tacit agreement to inform. But a researcher collecting DNA samples for a big data biobank has formed no such relationship and made no such commitment.’

Still, there should be some way -perhaps a retroactive clause that would enable a researcher to inform. One way, for example, might be to recognize that ‘people who submit samples for research might benefit from the same process that’s provided to people undergoing genetic testing in the clinic. Genetic counselling is strongly recommended before such testing, and this kind of preparation for research participants could clarify their decisions as well. Investigators who engage with these data on the research side deserve similar preparation and attention to their rights. Before getting involved in such studies, they should be able to give informed consent to withholding findings that could affect a donor’s health. Study investigators should also be unable to link donors and results, removing the possibility of accidental informing, and lifting the burden of the knowledge.’

Of course, the problem doesn’t just start and stop with whether the study participant decides she doesn’t want to know, does it? If the problem has a genetic component, ‘what about the people who were never tested but who are genetic relatives to those with an identified risk or disease? … After all, your genes aren’t yours alone. You got them from your parents, and your biological children will get some of yours from you…  in reality, the revelations – and repercussions – can span generations.’

On a lighter note, I can’t help but be reminded of my friend Brien. Readers of some of my more retirement-centered feuilletons will recall that he is a rather eccentric individual who seems to enjoy living on his porch and watching the world go by, no matter the weather. Rain or shine, summer or winter, I see him ensconced in his seat with a beer in his hand and another one on the railing in case I happen by. A harmless sort, and barely noticed by those who amble past, he is not an infrastructure man. His porch ekes out an existence from day to day in terminal decline. Every time I visit, he assures me that because the sidewalk leading to the house is also deteriorating, it discourages unnecessary visitors. And those who brave the path -me, I suppose he means- know and accept the risks -especially of the dangerous and disintegrating steps onto the porch.

But the last time I was over there, I almost put my foot through a rotting board near his chair, and I felt it had gone too far; I thought he should know. “Brien,” I started, somewhat hesitantly, given his explicit instructions to avoid any criticism of his porchdom, “I just…”

But he silenced me with a regal wave of his beer-hand -a sure sign of displeasure. “You’re gonna tell me something bad, I just know it…”

“No… I was just going to suggest that…”

“Remember the rules, eh?”

Brien can be so annoying sometimes. I think he honestly believes that naming a problem -identifying it by whatever means- gives it the right, formerly denied to it -of existence. So I shrugged, and decided to acquiesce and similarly ignore its right to life. Autonomy, after all is a right as well.

I didn’t see Brien for a week or two, but when I next happened by, as I often do on my way to the store, he seemed unusually bulky on his chair. He was covered in a thick Hudson’s Bay blanket, of course, but I assumed the cold autumn wind had made him bring it out early this year.

He waved at me from the porch and told me not to worry about the steps anymore. And as I approached, I noticed they were brand new and ready for painting. In fact, as I neared the porch, I noticed some of the boards near his chair had been replaced as well.

“What’s going on?” I asked as soon as he handed me a beer.

He smiled and pulled back the blanket to show me the cast on his leg. “I decided to take your advice…”

“But, I never…”

He held up his hand to silence me. “Sometimes I can hear what you don’t say, G…” he interrupted, calling me by my nickname. “And just because I don’t want you to tell me, doesn’t mean I don’t want to know about it, eh?”

I’m still not sure I feel good about not telling him, though…

The Problem of Puberty

Puberty is alchemy, don’t you think? Like the chrysalis of a butterfly, the girl emerges from the pupal case of her childhood into an adolescent -an almost-woman- with hormones ablaze. It is a magic time of change, both in growth and physiology, but also in cognitive development. It is a time of evolving expectations, but more slowly developing judgement –the brain, too, is undergoing renovations. Hence our oft-aggrandized memories of the time –not deceptions, exactly, but distortions. To paraphrase Napoleon: history is the version of past events that I have decided to agree upon.

Many of the manifestations we see of puberty are the confusion of autonomies –the challenges to the boundaries that society imposes. I think Wikipedia has summarized the issues quite succinctly: ‘Psychologists have identified three main types of autonomy: emotional independence, behavioral autonomy, and cognitive autonomy. Emotional autonomy is defined in terms of an adolescent’s relationships with others, and often includes the development of more mature emotional connections with adults and peers. Behavioral autonomy encompasses an adolescent’s developing ability to regulate his or her own behavior, to act on personal decisions, and to self-govern. Cultural differences are especially visible in this category because it concerns issues of dating, social time with peers, and time-management decisions. Cognitive autonomy describes the capacity for an adolescent to partake in processes of independent reasoning and decision-making without excessive reliance on social validation.’ It is obviously a special and bewildering, albeit a magical  time. A time for planting the crop that is to come…

Because there are so many physiological processes involved, the actual start of puberty has always been approximate. Genes no doubt play a major role in its onset, but nutrition and general health are obviously involved as well because puberty is changing –it’s starting earlier. As an article from BBC news reports: The age of puberty is changing around the world. In the UK it is currently starting about one month earlier every decade. In China it is more than four months earlier every decade. http://www.bbc.com/news/health-33168864

Of course, we have an almost obsessive need to analyze every change –to match every nuance with some overly reductionist, albeit plausible, explanation. Meat, for example. Yes, I’m serious: http://www.bbc.com/news/10287358  Although it’s an older study, and Vegan-unreferenced, I have to wonder if they could have equally successfully used milk consumption, or perhaps eggs, or even Starbucks coffee… 

But whatever the causes of earlier puberty, that very change may have unexpected –and perhaps unwanted- ramifications as the MRC Epidemiology Unit  at the University of Cambridge recently published using the data of almost half a million people from the UK Biobank: http://www.nature.com/srep/2015/150618/srep11208/full/srep11208.html

Doesn’t it seem strange that improving health and nutrition could have untoward, unintended consequences, although somewhat removed in time and maturity? Perhaps targetable with preventive interventions to be sure, as the authors point out in their abstract, but nonetheless ironic –the Red Queen needing to run faster and faster to stay in the same spot…

The most convincing evidence of the effect of an earlier puberty, apparently, is in its association with higher risks for type 2 diabetes and cardiovascular disease in women. A simple reasoned path to the type 2 diabetes (and its well known association with obesity) might be that: ‘early childhood rapid growth and overweight precede early puberty timing in both sexes, but in turn early puberty timing leads to subsequent rapid gains in weight and adiposity during adolescence and early adulthood’, but this may be an over-simplification of one of many factors that may be contributing –longer exposure to hormones, say, or life-style decisions altered by earlier maturation than peers: ‘environmental stressors may precede early puberty, but in turn early puberty leads to more risk taking behaviours and poor school performance.’ Intriguing, but speculative to say the least.

And on the more optimistic side of changing pubertal age? Well… there is a trend towards a lower risk for breast cancer in those with a later onset of puberty –although in fairness, this is likely related to a decreased time of exposure to hormones, so I’m not sure if it isn’t just a bit of trade-off… And anyway, trend is often what you call something that is not statistically significant (and yet perhaps lends credence to your hypothesis?).

But are we simply treading water in storm-tossed seas?  At risk of drowning in the details of semi-focused data swirling around us –most of which, at least in this case, was dependent on self reported medical histories and events that happened years before? Admittedly, the age of the first period is probably recalled with fair accuracy by most women –it is an event like few others- but aren’t researchers as seduced by this form of reasoning as the rest of us: the development of diabetes just begging for a scapegoat? So, choose the goat, widen the parameters, and voila…

An illustrative example of how easy it is to be led astray: many years ago, before we knew very much about the causal agent for cancer of the cervix (it is now known to be the human papilloma virus) but had pretty well decided it was something infectious –something sexually transmitted at any rate- the herpes virus came under scrutiny. It was infectious; many women exhibiting it also had abnormal pap smears suggesting precursor lesions for cervix cancer; and it was obvious –women who developed herpes were almost always aware of it. Herpes was easy to blame, because it was fairly straightforward to date the pap smear problem to some time after the event of acquisition. Everything fit –except it was not the cause. Not only did people who had never experienced herpes also develop abnormal pap smears, but similarly, not all people with herpes developed pap smear changes. The recall was an easy data point -something to blame- it’s just that it was the wrong thing.

My point is, it can be misleading to attribute cause merely based on recallable events. We all require explanations -something to blame. But, Post hoc ergo propter hoc? Well, the Latin may sound authoritative but not in Medicine. It is a logical fallacy…

This is all unfair to the study I know; I don’t mean to cast aspersions on either the researchers or their methodology, and yet I can’t help but worry about reports of this kind. Huge data bases are tempting geologies for data mining. But association is not necessarily causation.

As the humorist James Thurber once wrote: ‘Well, if I called the wrong number, why did you answer the phone?’ –just in case, I guess…