Angelina Jolie

"Knowledge is power," says Angelina Jolie Pitt with Respect to Genetic Testing

The FDA disagrees and prefers ignorance

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AngelinaJolie
LA Times

Back in 2013, actor Angelina Jolie Pitt revealed in a brave op-ed in the New York Times that she had had her breasts removed after getting the bad news that she carried a version of the BRCA1 gene that confers a high risk of breast cancer. How high? Her doctors esimated her lifetime risk of getting the disease at 87 percent and her chances of ovarian cancer at 50 percent.

Earlier this week, Jolie Pitt disclosed in another New York Times op-ed that she had lost the lottery with regard to ovarian cancer and had had her ovaries removed. Given the early upfront warning that genetic testing had provided, she and her physicians kept track of various biomarkers watching for signals that her ovaries were heading down the road toward malignancy. No tumor was found, but the signals were sufficiently worrying that Jolie Pitt chose surgery.

As it happens, I am in Russia this week giving lectures on how new technologies will empower patients and increasingly liberate them from the centralized medical-industrial complex. One of the big topics I discuss is the value of direct-to-consumer genetic testing. During the question and answer period, some audience members have suggested that most people are not informed enough to handle genetic information properly. 

Such questioners are reflecting the attitude expressed by Food and Drug Administration bureaucrats in their letter ordering the genetic testing company 23andMe to stop providing their customers with health information. Among many other things, 23andMe had been screening for some of the more prevalent BRCA1 genetic variations. The FDA's letter stated:

For instance, if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.

The FDA's evident assumption is that people who test postive will head right out and lop off their breasts. Apparently, the regulators don't think that what people would actually do is get another test and consult with their physicians.

Jolie Pitt gets it exactly right when she writes:

It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.

I respond to those wishing to deny genetic information to people who want it that ignorance is never better than knowledge when it comes to making choices, especially the hard choices that reflect your values.

For more background, see my colleague Nick Gillespie's excellent column, "I Want My DNA: The FDA is wrong to restrict access to cheap genotype screening tests."

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  1. During the question and answer period, some audience members have suggested that most people are not informed enough to handle genetic information properly.

    Some audience members think they know more than they do.

  2. I can see how prophylactic removal would be possible for organs, being distinct assemblies of tissue. Remove an ovary? Well, there’s no ovary there anymore for a tumor to develop in/on. Simple enough.

    How does that work for breasts? Remove everything down to the pect? Perhaps I’m just exposing my total ignorance of breast substructure and the nature of cancer therein (and my unwillingness to educate myself on the subject.)

    1. There are distinct types of breast tissue. Jolie explained some of it in her times editorial on her first procedure. She got to keep her nipples.

      1. “If you like your nipples, you can keep your nipples.”

    2. Even with that, a woman can still develop a “germ cell tumor” from vestigial ovarian cells. I took care of a woman with such a tumor in 1985! She had a total hysterectomy with ovaries removed, years prior to my discovery of the tumor. She needed a transfusion. Sadly, with one unit of blood, she developed AIDS. I don’t know what, eventually, got her. But, the chemo (or the AIDS) could have caused the brain abscess that she developed! I was not her doctor, when the final stages of her disease, finally, got her.

  3. You couldn’t pay me enough to give a shit about what she thinks about anything.

    1. That’s a funny coincidence, because she gets paid a lot and she doesn’t give a shit what you think.

      1. yeah but will she continue to get the big bucks now that most of her lady parts are in a dumpster?

        1. Well it’s not like she’s going to mess up a filming schedule with a pregnancy.

        2. Since she’s more of a director/producer now, probably.

    2. I respond to those wishing to deny genetic information to people who want it that ignorance is never better than knowledge when it comes to making choices, especially the hard choices that reflect your values.

      I’d love to take a drag off my cigarette and blow smoke in her face on this sanctimonious shit. Unfortunately, I’d have to bum one off her first.

      1. What exactly is sanctimonious about saying that information is better than ignorance?

        1. Ever had a genetic disease for which there was no treatment or cure?

          1. Do you always answer a question with a question?

        2. Moreover, she’s pictured smoking enough publicly and privately, that to preach about an 87% chance of breast or a 50% chance of ovarian cancer and the enlightenment the test imparts seems… inconsistent.

          It’s only moderately less irritating than the people who tell you tobacco will kill you.

          1. It’s only inconsistent if she’s smoking a cigarette with her vagina.

            1. Sure.

              Knowledge is better than ignorance when it comes to breasts and ovaries that you can just have lopped off. But, when you actively and knowingly destroy your lungs, you’re worse than ignorant.

              I’m not trying to prevent anyone who desires information from getting it, just pragmatically acknowledging that no one ever points out that ‘knowledge is bliss’ and that knowledge (or lack thereof) itself is neither good nor bad but the resulting (lack of) action.

      2. Unless Ron messed up his blockquote, that is his quote.

  4. The FDA’s evident assumption is that people who test postive will head right out and lop off their breasts.

    Actually, that’s kinda what they do.

    1. Except that was an FDA-approved test done by her physicians, wasn’t it?

      1. That recommended follow-up testing for confirmation.

        Don’t get me wrong. If stupid wants treatment for bonitis, Dr. Nick should be on call. I just think it’s wrong act like people won’t rush out and seek treatment for their bonitis.

      2. No – The FDA is not involved in lab testing.

        1. They’re involved in labelling.

          Abbott’s hCG test had like a 95+% sel./spec. rate in the general population (I forget exact numbers at this point but, generally, about 5% of the time it will give false positive/negative). It’s used for pregnancy and cancer *screening*. It was specifically labelled as such a tool and follow up testing was to be done for either diagnosis at the M.D.’s discretion.

          (At least one of ) The doctors in question only performed follow up on pregnancy testing and conducted repeated bouts of aggressive treatment of a woman who was inherently reactive to the test.

        2. And you’re a fool if you think the FDA isn’t involved in lab testing. They don’t directly monitor testing labs and their practices but pretty much anything and everything in a testing lab that is in any way used to produce patient results constitutes a medical device, and falls under their jurisdiction.

          It’s a little like saying Exxon isn’t in the transportation business.

  5. But what about all the jobs that will be lost if you don’t allow the “medical professionals” to do all the multiple rounds of testing, file the paperwork, make claims on the insurance and get partial reimbursement from the government?!

    /derpyderp

    1. One of the few good things about the ACA was that you can now get your lab results directly from the lab in all states. Good luck deciding what it means and what to do about it, but you can get them now.

      On the other hand, genetic tests usually cost thousands of dollars – so most people are not going to ask for one without a diagnosis from a doctor and a good chance that insurance will pick up the tab.

  6. new technologies will empower patients and increasingly liberate them from the centralized medical-industrial complex.

    And yet here we are, stuck with Obamacare, which sets the centralized medical-industrial complex firmly in stone with a one-size-fits-all approach. Is there anything government can’t fuck up?

  7. Uh huh, sure, Angelina Jolie has “bad genes.” I’m not buying it!

    1. Oops, and I forgot the ritual chant: Fuck the FCC FDA!

      1. cause there isn’t any point in fucking AJ anymore…

  8. ignorance is never better than knowledge when it comes to making choices, especially the hard choices that reflect your values.

    Well, it depends on what the meaning of “better” is.

    /sarc

  9. I’m curious as to which body part Ms Jolie is going to have removed next because she may have an increased risk of teh cancer? Anyone care to speculate?

  10. I have heard from doctors and genetic counselors that their problem with 23andMe wasn’t that they were providing test results directly to the patients. It was the fact that they were a poorly run lab with terrible quality and suspect results.

    Any woman who wants a BRCA test can get one from a reputable lab (Myraid, Ambry, Quest, LabCorp, etc…). However, if she does not meet the risk criteria of family members with certain types of cancer, her insurance probably won’t cover the test. Out of pocket is somewhere around $2,500.

  11. If ‘knowledge is power’, then why doesn’t she educate herself…
    http://www.amazon.com/Tripping…..+the+truth
    This sets such an ignorant precedent, it’s scary how many dumbasses will follow in her footsteps. Some day we’ll actually come out of the cancer dark ages…

    1. Thanks for that link. My mom was recently diagnosed with leukemia. I’m more afraid of the out-dated, paint-by-the-numbers advice her doctors are giving her, than her chance of actually dying of it. I’ve encouraged her to make some serious diet changes. But it’s remarkable how many doctors don’t get the link between diet and disease. It’s even more remarkable how many fat doctors and nurses I’ve seen over the years.

  12. Here was my thought when I heard about this:

    Angelina has just had surgically removed that which we surgically add to men to make them women. If adding these bits makes you a woman, wouldn’t removing them make you not a woman any more?

    Asking for a friend.

  13. Angelina, your comment about how ‘Knowledge is Power’ was spot on as far as I am concerned, because, I have just written my first book about it and you made that comment on the day it became ‘Live’ on Lulu.com. What a great coincidence eh? And, now you know for yourself that when knowledge is acquired it gives you the ability to do something, in other words it gives you ‘Power.’ Now, along with your conventional treatment, try a bit of unconventional stuff, tell your body’s cells each day to renew, re-juvenate, replenish, re-vitalise, repair and heal with loving, youthful, healthy and happy cells. Tell them! X Joan

    1. Sadly, there are, way, too, many doctors that think patient knowledge is bad. Maybe that is why most of them spend a few minutes saying nothing, then on to the next insurance holder! My patients were partners, in dealing with their medical problems! Maybe that is why the old coots wanted to run me out of town! Their God act was being exposed!

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