Tell kids the Tooth Fairy is fake, and their lips are sure to tremble. Reveal the list of their birthday gifts the day before the party, and they may well despair.
Those who don’t want to hear such things can try covering their ears with a ‘la-la-la-not-listening,’ but the blabbers, in most cases, aren’t violating anyone’s rights. But what about a nurse who blurts the gender of a baby to parents who didn’t want to know? Or adoptive parents who tell kids their birth origins even though it may mess the kids up? And how about terminally ill patients who would feel hopeless if they knew they were dying?
Ethicists in the ‘80s first applied the right to not know something to people with genetic ‘scary stories’. If I’m a diabetic-in-waiting or future life-long-inpatient, they argue, I should be allowed to be blissfully blind. And if I’m terminally ill, I have the right to be free of the stress, depression, or Hollywood-ish spending sprees that may be caused by having ‘too much information’ about my fate. It’s not up to my doctor to choose what’s kept secret; I must activate the right by requesting, please and thank you, to remain ignorant.
But this right, nearly never enforced, often gets kicked away. Policymakers trump it with arguments of utility, most notably in Holland. Dutch parents-to-be who have a family history of Huntington’s Disease, which causes mental and physical degeneration beginning around age 40, will often seek in vitro fertilisation to prevent passing the gene on to their children. Most of these parents wouldn’t like to know for sure if they have the Huntington’s-causing gene, but request in vitro just in case. However, the Dutch government decided that parents must prove the in vitro is ‘necessary’ by being tested for the gene, which implicates the parents finding out if they themselves will get the disease in the future. This illness has no cure, so the discovery becomes ‘very burdensome knowledge,’ as some academics describe it. ‘The right not to know is underappreciated in policy-making,’ reads an article in the Journal of Medical Ethics. Indeed, if I were a Hollander with a future of Huntington’s, I’d be seeking hypnosis to forget.
Doctors also sidestep the right to not know by prioritising the right to know, which only sometimes serves its purpose of enabling patients to remain autonomous and get help. Last year, a British woman with leukemia, 24-year-old Vickie Harvey, was told she was terminally ill, even though she had requested not to hear anything negative, and even though there was no help she could get. In response, nearly seven thousand people in the UK signed a petition for parents to be able to opt their children out of knowing if their illness becomes terminal. When palliative care experts debated the topic in the British Medical Journal, some held that patients must be told complete information to make ethically sound decisions, while the minority argued patients should have the right to not know, because terminality is never a certain prognosis.
There remains no formal means of opting out of information, but medical ethicists still face the dilemma of Harvey’s case. When doctors warned her of imminent death, including ‘graphic detail’ says her mother, she broke down and stopped getting out of bed. Hopelessness, her parents say, only sped up her dying.
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