Bioethics

Hey Bioethicists, Stop Treating Us Like Dim-Witted Children!

Let us decide for ourselves if genetic ignorance is bliss.

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PrecisionMedicine
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The Precision Medicine Initiative aims to sequence the genomes of one million Americans who will share their genetic data, biological samples, and diet/lifestyle information, all linked to their electronic health records if they choose. Launched earlier this year, the National Institutes of Health explains that the research will:

• Advance pharmacogenomics, the right drug for the right patient at the right dose

• Identify new targets for treatment and prevention

• Test whether mobile devices can encourage healthy behaviors

• Lay scientific foundation for precision medicine for many diseases

In addition, the NIH promises that the initiative is pioneering a new model for doing science that emphasizes engaged participants, responsible data sharing, and privacy protection. Not at all surprisingly, some bioethcists have succumbed to their customary knee-jerk paternalism and are arguing for a "model" that denies participants access to their own genetic information.

The journal Nature is reporting this week some are pushing back and arguing …

… that participants should at least have the option to see all their personal data so that they can investigate their own health…. But some specialists in the field say that showing participants their data is irresponsible, because the information is challenging for people to interpret and its significance is often uncertain.

Most genetic variants linked to disease increase risk only slightly, yet people who discover that their genome holds such a variant might worry excessively or seek unnecessary medical tests. Or they might do nothing: the limited research on how people react suggests that, far from causing panic, information about common variants of small-to-moderate effect does not seem to motivate people to make recommended long-term behavioural changes to lessen risk. "Unless you give people the tools and the skills to deal with the raw data, I don't see how you could give them the raw data," says Brian Van Ness, a geneticist at the University of Minnesota in Minneapolis.

Others counter that letting researchers choose what information to share with participants is paternalistic. "I don't know why we're so afraid of the genome that we say it's dangerous for people to have this information," says Sharon Terry, director of the Genetic Alliance in Washington DC. "All of us live with all kinds of uncertainty all the time."

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Trey is entirely correct. In all my years of reporting on medical biotechnology, I have never come across any research suggesting that any substantial number of people given access to their genetic or genomic information ever freak out over what they are told. And even if a few do, that's no reason for the medical research establishment to treat the rest of us like dim-witted children.

In its 2013 letter banning the genotype screening company 23andMe from sharing genetic data with new customers, the bureaucrats at the Food and Drug Administration had to make up dire scenarios since they could identify none in the real world.

In my article, Warning: Bioethics May Be Hazardous to Your Health, I opened by reporting how bioethics mandarins tried to abuse breast cancer survivor Joy Simha:

In 1996, a 28-year-old breast cancer survivor named Joy Simha decided to take the new genetic test for the breast cancer gene BRCA1. If Simha tested positive for the gene, she would face a 50 percent to 85 percent chance of her breast cancer recurring or of developing ovarian cancer in her lifetime. As a preventive measure, she planned to have her remaining breast removed. But her oncologists at Sloan-Kettering Memorial Cancer Center in New York refused to tell her the results of her own test.

"It was just a very paternalist attitude," Simha says now. "They kept telling me, `We really feel that the results could be dangerous if they are revealed to you at the wrong time.'" So Simha took her frustration to the press. "If I did not want to know the results of my tests," she wrote to The New York Times Magazine, "I would not have given the doctors my blood."

By refusing to reveal such test results to their patient, Simha's doctors believed they were practicing medicine at the highest ethical level; keeping patients in the dark in such circumstances has been recommended by such prestigious bioethics authorities as a 53-member panel of ethicists and lawyers chaired by Stanford University law professor Henry Greely. "The test for BRCA1 should be confined to the research setting," declared the panel's report which was presented at a conference at the University of Southern California's Pacific Center for Health Policy in 1996. The ethics panel advised women not to take the commercial test for BRCA1 because "there are no known methods for preventing breast or ovarian cancer that would be particularly important to women with versions of these genes." …

But Simha's story has a happy ending. As a result of the press attention, her doctors relented and gave her the test results. She had tested negative, and she dropped plans for another mastectomy. Far from having a "toxic" result, the test actually helped Simha avoid another dangerous and painful procedure.

Furthermore, the Pacific Center was wrong in stating that there is no way to avoid breast cancer. A Mayo Clinic study published in January in The New England Journal of Medicine found that "surgery that removes the breasts as a preventive measure before the appearance of cancer reduces the risk of breast cancer by approximately 90 percent for women at moderate to high risk for the disease." That is precisely the treatment that Simha had planned. But though the Mayo study is important, it is beside the ethical point: Even in the face of medical uncertainty, such decisions should be up to Simha and other at-risk women, not a panel of imperious bioethicists.

Just as true now as the day I wrote it more than 15 years ago.

Bioethicists: Let us decide for ourselves if genetic ignorance is bliss.

Note: If you are interested in finding out some of what is genetically wrong with me, scan through my genotype screening information online here. I have nothing to hide.

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  1. I want the people to know that they still have 2 out of 3 branches of the government working for them, and that ain’t bad.

    1. Sorry, meant for Isis spin thread!

      1. Works here, too. Well done!

  2. information is challenging for people to interpret and its significance is often uncertain

    Isn’t this an argument for dispensing more rather than less information?

    When medical care is fully roboticized, bioethicists should be press-ganged into oiling and polishing the machines.

    1. No, they should be pressed to provide the oil and polishing compound.
      They’ve done nothing but evil.

      1. Olive oil comes from olives… peanut oil from peanuts… baby oil from…

        Or in this case, crybaby oil.

  3. People aren’t meant to know things. Just ask Lovecraft.

    1. But the gibbering imbeciles aren’t the patients in this case, they’re the bioethicists.

      1. See! They’re just trying for save us from the cosmic horror.

  4. The Mister T DNA Kit – “Predict Your Medical Future!”

    “My prediction is….PAIN!!”

    1. “And for all you fools out there…PITY.”

  5. The job of an ethicist is to come up with rationalizations for things that most people think are ethically repugnant.

    1. So bioethics is more imperative than descriptive.

    2. The job of an ethicist is to come up with rationalizations for things that most people think are ethically repugnant.

      It isn’t Bailey’s job, more of a hobby, really.

  6. We must preserve the authority of the duly licensed enlightened.

  7. Bioethcists are straight up con men/women. They are people who are telling anyone who will buy it that they fill some needed role that no one asked for or actually wanted. They create “need” for their services by being “concerned”. It’s a fucking scam. You should flat out ignore the slimy fucks, or else you’re just another one of their dumbfuck marks.

    1. And if anyone knows about dumbfuck marks…

      1. DON’T TALK SHIT ABOUT YOUR MOM

        1. Mother’s Day has come and gone, I’ll say whatever I want.

          1. You know who else comes and goes on Mother’s Day…?

            1. Not my wife.

            2. Fist of Etiquette?

    2. No, they didn’t create the original need for themselves, gov’t did with examples like the Tuskegee syphilis experiment. Bioethics was a response to those revelations. Of course the only actual response needed was, “Don’t be evil.”, so bioethicists did wedge open that crack into a field by making it look like more than it appears.

  8. But her oncologists at Sloan-Kettering Memorial Cancer Center in New York refused to tell her the results of her own test.

    The only people who should get a say in the process are the ones who paid for it.

      1. Unfortunately, but hey, that’s what everybody wanted right?

        1. Withholding medical information is simply the name for things we do together.

          1. +1 Social Contract

  9. Telling people scary information will make people freak the fuck out. Which is the exact opposite of what happens when you tell people that you can’t tell them scary information because they might freak the fuck out.

    1. And everyone overlooks the obvious point — doctors, biologists, “bioethicists”, all are nothing but ‘people’.
      Apparently, because they freaked the fuck out first they get final say in whether anyone else can see the information that so twisted their limited little minds.

  10. So… This seems a good place to mention that I’m about to build a pharmacogenetics testing laboratory on a direct-to-consumer, cash model (with a doctor’s order, in case the feds are listening). Pay the base fee, get your test results and full report sent to you, your doctor, and your pharmacist. Pay an additional subscription fee, and you’ll get report updates for life, including updates if you change or need to go on a new medication. The information is *yours* to carry with you wherever you go.

    I’m considering a Kickstarter campaign to help fund it, with “validation” contributors being first to get their reports.

    My question is… would that be illegal?

    1. It’s always illegal. The question is whether or not the regulators like you.

      So, are you likable?

      1. My clients have thus far referred to me as “goddess”, “amazing”, “exceptional”, and “exquisite” (referring to your work, mind you, not my physique)… This probably means the regulators would decide to hate me.

        I’ve always made nice with FDA in the past, though.

            1. *pat pat*

              There, there, Fd’A, it’s alright.

      2. Likable in this context meaning “able to cough up substantial fees.”

        1. Not yet, but the margins I’m looking at will solve that problem in a few months.

    2. It depends on if the FDA believes you are “diagnosing” anything.

      1. Right. The beauty of pgx testing is that is has nothing at all to do with disease risk. It’s about (a) what your body does to the drugs you take and (b) what those drugs do to your body.

        Lexapro 10 mg doesn’t work for you? If you’re a rapid metabolizer, you need a larger dose.

        Hydrocodone as effective as a tic tac? Maybe you’re a poor metabolizer, whose liver can’t convert the drug to morphine.

        A lot of labs test for thrombophilia risk, but I’m not all that interested in that, as I think the evidence is weak (and getting weaker). I’m going to stick the most strongly supported genes, and that’s it.

        1. It’s not about FDA, it’s about the state lab licensing authorities. I believe those results would be considered diagnostic or their equivalent, at least by most states. But diagnostic labs are a very good biz, so why not get yourself licensed & rake in the $?

          1. Oh I know. I’m well familiar with the licensing and inspections deal. At my old job I wen through NYS and CAP inspections… NYS is a bear!

            I’m just wondering if I can offer Kickstarter contributors an incentive of a genetic report if they contribute at the putative price point of $100-$150… without a doctor’s order on the requisition form.

    3. No, it’s legal. You have to jump thru the hoops to get licensed as a diagnostic lab in not only the state you’re operating in, but the states you receive samples from (for most states).

  11. MY work, dammit.

    My kingdom for an EDIT button!

      1. He and I are on good terms, certainly.

      2. Muphry’s Law?

  12. It seems to me (although I could be missing something) is that the Bioethicists have taken a big step across a line and made the assumption that giving patients control over information about themselves will lead to a commensurate LOSS of control by the medical establishment

    …and that patients will start demanding procedures and medications that will put pressures on the entire treatment infrastructure to keep up with new demands

    Its like there’s a level of conceptual “Meta-Triage” they don’t want people to think about. ALL treatment must be by consultation only. No one should be making decisions about themselves.

    But they still advertise medications to people, and tell them to “ask their doctor”. Because you want more boners, right? well, its not the medication that will grant them to you… its the doctor who’ll give you permission

    1. This is exactly it. It challenges their position of authority.

      Having dealt with multiple doctors and specialists who were incompetent and in one case put my daughter in a neurological seizure by prescribing the wrong meds, I take this all very personally.

      1. Its really about keeping the ‘gatekeeper’ role of the primary care physician in the current Insurance-paid scheme of medical care.

        If we had fucking HCA’s, and were spending our own money, those people would be utterly useless… making us schedule appointments and wait for hours so they could listen and nod and then “refer” us to one single possible guy that we could see for further actual services, or put us in line for the MRI machine at the hospital.

        The idea that people will panic and over-demand services they don’t need is only possible when we think we’re spending “someone else’s money”.

        If we were using our own resources, you can be damn sure we wouldn’t “Over Use” healthcare any more than we “over use” the airbags on our car.

        1. I think it goes deeper than that. They have spent years and hundreds of thousands of dollars to become the fonts of medical wisdom. When some layman with an internet connection is able to quickly and effectively delve into a specific medical topic, it is an affront to their self-image.

          There is no rational reason to deny medical information a patient.

        2. The most fundamental, basic thing wrong with health care is the hiding of price signals. The bundling of health care into employment in WWII to be able to provide additional compensation because the government was freezing wages was probably one of the worst things to happen to health care in this country for that reason alone.

          1. I don’t disagree with this assessment. I just find that many specialists and doctors do not want to acknowledge an informed patient. They resist the idea that they have to discuss the situation with them and cede the final decision, unless of course the decision is predetermined.

            1. Yes, and so do many used car salesmen. When you have direct, un-obfuscated views of what you are spending on, how much, and why, you will jettison providers who annoy you, who lie to you, who try to snow you. The parasites who sit in health care do so because they are enabled by the masking of price signals.

              1. I am reminded of the doctor who made millions by recommending patients to get heart surgery (which he performed) which were completely unnecessary…

                …it was a scam that would never have worked if people had the ability to switch doctors, review info themselves, and spend their own money

          2. “The bundling of health care into employment in WWII”

            Its notable that it was Eisenhower who first tried to undo this and just create single-payer (or something like it)

            Meaning, no one ever thought this perverse set of incentives was a good idea.

            1. Well, of course it was a terrible idea. It was birthed as a response to fucking freezing wages because of war. War is pretty much flat-out bad all around. And it creates fucked up situations that last far beyond when the war is over.

              1. It’s interesting to reverse-engr. their analysis at the time. Apparently they didn’t want $ to get out in the form of wages, putting upward pressure on the prices of consumer goods and/or causing shortages if those were frozen; but they figured that $ flowing thru medical care would have such low velocity as to be negligible in effect on those parts of the economy they were concerned about.

      2. Speaking of incompetent doctors, I had one doctor tell me that the pain from a 1″ kidney stone lodged in my kidney was just a pulled muscle.

        1. My wife went thru 2 weeks of that as a teenager because the doctors told her she was just over-reacting.

        2. Yes, the 7-mm stone lodged in my ureter was just a UTI.
          I know your pain!

        3. Recently I went in to Jacobi Hosp. with a dog bite, wound up in the CCU due to atrial fibrill’n. They wasted a whole day titrating me w a drug I knew would not be effective, continuing to increase the dose even while seeing no effect.

          1. The next day they succeeded with the drug I suggested.

  13. Looks like what we have here are practitioners of the Precautionary Principle. Where would we be without Top Men to guide us in…some direction or the other(?)

  14. But that’s the joy of being an ethicist: talking to everyone else like they’re children.

  15. In all my years of reporting on medical biotechnology, I have never come across any research suggesting that any substantial number of people given access to their genetic or genomic information ever freak out over what they are told.

    You know who else didn’t freak out about his genetic information?

  16. because the information is challenging for people to interpret and its significance is often uncertain

    You do know that’s the whole model of the Catholic Church, right? The laity is too ignorant to understand the Word and therefore we must have the priesthood to explain the Word to them – and to keep them from reading the Word for themselves. And at some point the job of ‘gatekeeper’ becomes ‘gatemaker’ – your job isn’t really to control who goes in and out through the gate, your job is to make sure there’s a gate and everybody goes through the gate and everybody pays the gate toll because how else are you going to pay for the gate you went to all the trouble of building? Gates need gatekeepers and gatekeepers need gates, what don’t you understand?

  17. “Unless you give people the tools and the skills to deal with the raw data, I don’t see how you could give them the raw data,”

    Fine, so who’s against giving them the tools & skills too?

  18. I’ve got a mobile device that promotes healthy lifestyles. It’s called a bicycle!

  19. I don’t like how entwined my personal information is with my doctor, insurance company, the government, etc. I like experimenting with diet and exercise and it would be really cool to do more frequent bloodwork. Also, being able to customize a screen would be really cool, too.

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