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 ‘Whether ‘tis 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…