Would You Want To Know Your Risk of Losing Your Mind?

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Not scans of my brain.

According to one estimate, one in seven Americans over age 70 suffer some form of dementia. Alzheimer's disease is the most common cause of dementia in seniors, accounting for 2.4 million of the 3.4 million Americans with the condition. The New York Times recently ran a probing series, The Vanishing Mind, that looked at various aspects of dementia. On December 18, the Times asked, "Tests Detect Alzheimer's Risks, but Should Patients Be Told?" The article covered a variety of new tests including brain scans using MRI, spinal taps, and genotype screening that are being used to diagnose Alzheimer's disease in patients before the onset or at the earliest stages of the malady. The question is: Should patients be told?

I'll tell you my answer now: Hell, yes. If they want to know.

One of the tests discussed in the article is APOE screening. The APOE gene has three variants. As the Times explained:

People with two copies of one of the variants, APOE4, have a 12- to 15-fold increased risk of Alzheimer's disease. People with even one copy of the gene variant have about a threefold increased risk.

The Times further noted:

Five different published consensus statements by ethicists and neurologists had considered the question of whether people should be told the results of APOE tests. And every one of those committee said the answer is no, do not tell.

The ethicists' paternalistic concern is that there is no treatment for Alzheimer's disease, so why burden patients with this doom? Patients, poor dears, simply can't handle the truth. The Times then goes on to report research by Boston University physician Robert Green who wondered if this paternalism was warranted:

"It seemed rather strange to be in a position where family members are coming to you and saying, 'I really understand APOE genotyping and the idea of a risk gene, and I want to know my genotype,' and then to say to them, 'I could tell you that, but I'm not going to.' " After all, he said, "Part of what we do in medicine is to inform."

He knew what it meant to tell people they were at high risk.

"Alzheimer's is a fearsome disease," he said. "You can't get much more fearsome than Alzheimer's." And yet, he said, "People still wanted to know."

He decided to do a study to see what would happen if he told.

The first surprise was how many people wanted to know. To be in the study, a person had to have a first-degree relative who had had Alzheimer's, making it more likely that they would have an APO e4 variant. Dr. Green thought maybe a small percentage of the people he approached would want to have the genetic test. Instead, nearly a quarter did.

"Frankly, we were terrified in early days of this study," Dr. Green said. "We did not want to harm anyone. We were very, very thoughtful and intense. We sat with people beforehand and asked if they were really sure they wanted to do this."

But his subjects were fine with the testing. After they gave the subjects their test results, researchers looked for psychological effects, observing participants in conversations and administering standardized questions designed to detect anxiety or depression or suicidal thoughts. They found nothing.

On December 25, the Times' printed several letters reacting to the testing issue. Selected quotations below:

Mount Sinai School infectious disease specialist Mahesh Swaminathan:

At some point I may be told I have the disease that will be my undoing. When that day comes I hope that my doctor will respect me enough to tell me the truth so my family and I can face the future with courage and dignity.

Florida resident Lois Bloom:

I understand that there is no cure for Alzheimer's disease and that little if anything can be done to postpone it or to treat it once it is manifest. But that is a clinical, medical rationale for withholding the diagnosis.

I am all too aware of what having that information means since my mother died of Alzheimer-related causes. Nevertheless, I most definitely do want to know if the same fate is in store for me so that I can begin to plan the rest of my life while I am still "in charge."

Alzheimer's activist Meryl Comer:

As the caregiver for the past 17 years for both my husband (early onset Alzheimer's) and my mother (late onset), I had a genetic screening three years ago that indicated a gene variant that puts me at increased risk.

So when doctors ask why we should test until we can effectively treat, I would respond that we, as a baby boom generation of potential victims, own that decision — not our doctors.

The Times printed just one pro-paternalism voice.

Johns Hopkins University geriatrician Thomas Finucane:

Thinking of elderly patients whom I've known for years, I am nearly certain that informing patients of the diagnosis of Alzheimer's disease as early as possible, or telling them of an increased risk of the disease, will be harmful on the whole.

As I discussed in my recent article on the science, policy, and ethics of genetic screening, I'll Show You My Genome, Will You Show Me Yours?, I did have an APOE test. As I reported:

The prospect of Alzheimer's disease is so frightening that two prominent researchers who have had their genomes scanned—James Watson, co-discoverer of DNA's structure, and Steven Pinker, a cognitive psychologist at Harvard—declined to learn what their gene tests have to say about their risk of it. Specifically, they didn't want to know if they carry copies of the APOE4 allele, which boosts the odds that a person will eventually get Alzheimer's to as much as 20 times the average. (More happily, recent research suggests that people carrying APOE4 alleles have better memories in their youth than those who carry the APOE3 variant.)

Unlike Watson and Pinker, I do want to know. Not all gene screening companies include APOE4 testing, but Pathway Genomics does. The good news is that my failing memory is not due to APOE4; I have inherited two copies of the more common APOE3 variant, which suggests that my lifetime risk of Alzheimer's disease is average. Of course, there are other gene combinations that can increase or decrease my risk.

Subsequent to the article's publication, I discussed it on a Wisconsin public radio program. Several calls from listeners suggested that they did not want to know about their Alzheimer's risk. I don't understand wanting to remain ignorant in this case, but as I told them, if you don't want to know, don't take the tests. However, I expect my physicians to treat me like an adult.

NEXT: Reason Writers Around Town: Cathy Young on the "No Labels" Movement

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  1. Clancy: Your loss.

    1. Simply the mere opportunity to make a cogent last will would seem like more than enough reason for a doctor to inform a patient. Why is this different if the patient has terminal cancer? They are told.

      Silly nannys.

      1. This was my first thought as well. If a 40 year old knows he’s going to have Alzheimer’s at some point later on, wouldn’t it be better he set up his living will, last will, DNR orders, and financial planning to accommodate that?

        Nah, let him work his whole life so he can spend his last years on earth without any idea of what’s going on while his children fight over any possible estate/avoid the responsibility of taking care of a sick parent.

        The notion that I shouldn’t know about a medical condition I may actually have is truly perverse.

    2. Not really. After reading the first paragraph I was reminded of how doctors in Japan seldom, if ever, inform there patients that their condition is terminal.

      Since the US is following the economic policies of Japan’s lost decade, it only makes sense that we would start to emulate their medical culture as well.

      1. I’m still waiting for American leaders to adopt the sepukku tradition.

        1. Our businessmen could lead by example. Shit, that sounded a little prog, didn’t it?

  2. I expect my physicians to treat me like an adult

    At least the government would never step in and create a law/regulation that would state what you could and could not know about your health.

  3. Sometimes I’m surprised at the maturity of New York Times commenters. Not all of them are nannies who want to control other people’s decisions (though many are).

  4. I find it stunning that the question was put forth as an ethical issue. I can understand someone’s personal preference for not wanting to know, but the idea that it would be ethical to translate that individual preference into a universal policy is not something you would expect from anyone that respects individual sovereignty. Have we become so used to being protected from bad news that we are willing to turn such decisions over to some corporate (or governmental) policy board?

    1. That’s how it is with so many medical decisions, which are pretty much always a cost-to-benefit analysis. Because we are all different, with different resources and priorities, it’s obvious that the cost-to-benefit balance will be different for different individuals, thus everyone ought to make such decisions for themselves. But the public health “authorities” are always wanting to make a one-size-fits-all recommendation regarding mammograms, other tests, etc. as if we are all the same. Why can’t each patient decide for themselves?

  5. Sooner or later there will be a malpractice suit against a doctor who failed to inform. On the basis of
    an Alzheimer patient and family not being warned, and pissing a substantial family estate away before
    being diagnosed as incompetant.
    {yeah, I’m looking at you Hef.}
    starting to

    1. Hefner believing a woman 60 years his junior “really loves him” is true dementia.

  6. It was once accepted practice that doctors and loved ones would conspire to keep a terminal diagnosis secret from a patient especially when the patient was a child or young adult. It was considered cruel to tell someone they were going to die but that there was nothing anyone could do. It interesting how the culture has changed. Of course, back then it was a more intimate group of people making the decision and not an impersonal institution.

    1. In the Akira Kurosawa movie Ikiru, this is exactly the way the doctors handle a stomach cancer diagnosis. The patient finds out anyway (or there would be no movie).

      I’ve heard this was normal for Japanese doctors until the 1980’s.

      1. He then orders a double from the prison population to take his place in the hospital in an effort to fool the other generals.

        1. I thought he ceded control of his kingdom to his three sons, 2 of which used their newfound power to destroy him?

    2. A more intimate group of people who have more to gain when you croak. What a terrible idea of “culture” that one’s own family has more power over your own diagnosis than you do.

  7. This is no different than “medical ethicists” deciding that fathers shouldn’t be told when the results of blood or DNA tests indicate that their children aren’t biologically theirs i.e. the mother cheated on them.

    1. What is the current law on this? I’m curious, especially with the case of the man in Canada who was still ruled responsible for child support even when the children turned out not to be his (and there are many other similar occurrences here, too).

      1. There is no law, what the doctors do is entirely up to them. It’s simply doctors making the very feminist decision that women shouldn’t suffer blowback for their lying and cheating, so they’ll tell the mother the results of the test but not the father. It usually becomes obvious to the father when the doctor is evasive or won’t give a specific answer as to what the test revealed.

        This problem is why feminists in the UK got the government to make it illegal for fathers to order DNA tests on their children without the mother’s consent (mothers don’t need the father’s consent). “Too many” men were having mail-order DNA tests done and finding out the children weren’t theirs. Feminists were complaining the DNA tests were leading to a “breakdown of the family”, as if that’s what they’re really worried about.

        As for child support, I think Georgia allows repudiating paternity via DNA test. I don’t know if any other US state does. Generally, in the US it’s impossible to repudiate paternity.

  8. The question is: Should patients be told?

    It’s always entertaining to see a rapidly pro-choice publication try and rationalize that it’s not always your body and your choice. As usual abortion presents no such bioethical challenge.

    1. I’ll tell you my answer now: Hell, yes. If they want to know.

      rationalize that it’s not always your body and your choice.

      WTF? Reading comprehension much?

      1. I think he was referring to the New York Times, not Reason.

  9. Since death is not currently avoidable, doctors should do everything in their power to keep their patients from knowing that they will ever die.

    1. Ministers, rabbis, imans, etc. too.

  10. There are valid reasons for not wanting to know, such as potential discrimination.

    There’s also the desire not to obsess over one risk factor out of thousands/millions in our life.

  11. Of course I would want to know. That way I could plan ahead and make sure I have the care available to me if I run into problems. I could also tell my friends and family what symptoms to look for so I could start treatment early and not as someone else said, piss away my money.

  12. Gee-zuss!

    At what point in their training do would be ethicists get the stupid installed?

    The question is: Should patients be told?

    I give fair warning to everyone treating me: if I learn that you held back something that important there will be hell to pay. Likewise if I learn that you help back on someone whose care falls into my bailiwick, you will answer for it.

    Or, so be more succinct: Who the hell do you think you are, asshole?!?

  13. While I think that most people are not competent to judge the implications of “most” genetic risk assessments, likewise, most people are not competent to calculate the interest on their mortgage. In the later case, however, the mortgage terms are (by law) clearly spelled out and the market provides all the assistance that anyone could need in assessing the implications of a particular set of mortgage terms. Alas, even with all that help, too many people don’t appear to understand what they are signing.

    1. Of course I think that people should still have the information, even if they don’t know what to do with it.

  14. If you have a parent with Alz. don’t you already figure there’s a good chance you’ll get it too?

  15. This article made we want to diseshprawahjubwic, but then I mermbermshmembled.

    Damn kids.

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