Do You Have a Right to Genetic Ignorance?

Bioethicists say yes, but it's not a good idea.


As all the world knows now, Hollywood star Angelina Jolie chose to have a preventive double mastectomy to reduce her risk of hereditary breast cancer from around 90 percent to five percent. Jolie made her decision based on the results of a specific genetic test that found she carried a high-risk version of the BRCA gene. Once a significant advance in diagnostics, such single-disease genetic tests are already being superseded by whole genome testing, in which all of a person's genes can be checked for variants that are associated with higher or lower risks of various diseases. In response to the rapid progress in whole genome testing, a panel of experts convened by the American College of Medical Genetics and Genomics (ACMG) issued a new policy statement in March on the medical and ethical implications of incidental genetic findings for patients and physicians. Some prominent bioethicists claim that the claim that the college's recommendations violate your right to remain ignorant of your genetic risks.

In its report, the ACMG panel recommended that laboratories performing clinical genome sequencing on both adults and children look at 57 specific genes for disease-causing mutations. These mutations are associated with 24 different disorders, chiefly related to cancer and heart disease risks. The laboratories, the panel continued, should report all their findings about those genes to patients and physicians so that they can take early action to prevent or reduce the chances of illness or early death. Do those recommendations violate the hallowed bioethical principle of patient autonomy?

Whole genome testing is becoming ever cheaper and more widespread, enabling testing clinics to detect not only mutations relevant to the specific illness being investigated but also genetic variants that may be associated with other disease risks. The ACMG likened the situation to the case of a competent doctor who, while investigating a patient's complaint about gastro-intestinal symptoms, also examines her cardiac and respiratory systems. For example, a physician using ultrasound to check a patient for gallstones might also discover an aortic aneurysm; the aneurysm is incidental to the gall bladder problem, but it is obviously relevant to the patient's future health. Surely most of us would agree that it would be wrong for the doctor not to tell her patient about the aneurysm.

Consider a physician who finds a number of polyps while performing a colonoscopy on a female patient. As part of her treatment plan, the physician orders a genetic test to look for possible gene variants associated with increased risk of colon and other cancers. (Labcorp, for example, offers a test that looks for particular mutations associated with higher colon cancer risk.) In this case, the patient's tissue is sent to a lab, such as Ambry Genetics or XomeDx, whose standard comprehensive genomic tests look not just for gene variants related to colon cancer but mutations in other genes that correlate with other risks as well. The results reveal that the patient, like Jolie, carries mutations in the BRCA gene that dramatically boost her lifetime risk of breast cancer. The patient has not consented to being checked for breast cancer risk. Should the lab report those findings to her physician, and should her physician tell her those results?

Three prominent bioethicists say they shouldn't. In a May 17 article for Science, Susan Wolf of the University of Minnesota, George Annas of Boston University, and Sherman Elias of Northwestern University wrote that patients "have a right to refuse testing and findings, even if potentially lifesaving. Just because many patients might want this information does not mean that it can or should be imposed on all." They dismiss the gallstone/aneurysm analogy, arguing that "patients would have no reason to expect a hunt for incidental findings in the 57 disparate genes on the ACMG list." They further point out that the ACMG list "includes genes whose analysis and reporting have long required patient consent." 

The bioethicists additionally objected to giving parents incidental genomic test results obtained by testing their kids. Previous bioethical statements have called for limiting the genetic testing of children to those assays that provide information that is medically necessary for treatments during childhood, and so many bioethicists are opposed to testing kids for adult-onset risks. The idea is that when a child reaches adulthood she can decide then whether or not she would like to take such tests or know the results of earlier tests. Bioethicists also worry that knowing a kid's future genetic risks will adversely affect how parents rear the child.

The ACMG accepts that children in principle should not be tested for adult-onset genetic risks such as BRCA gene breast cancer mutations. The panel notes, however, that an incidental finding that a child carries a pathogenic mutation also suggests that there is a high probability that one parent does as well; reporting such an incidental finding could benefit the affected child by preventing a bad health outcome for her parent. In addition, in the absence of any known family history of risk, a child might benefit from being alerted to an incidental finding because, unaware of her risk, she might not otherwise get herself tested before the onset of the disease in her adulthood.

In my view, the bioethicists writing in Science are indulging in moral hyperventilation. Genomic testing companies like Ambry Genetics and XomeDx have indeed adopted the AMCG incidental findings recommendations, and they report the results to physicians and patients as a default. But they also offer test subjects and patients consent forms that allow them to opt out of learning about any incidental findings. In the real world, patients are not being forced to hear genetic information to which they have not consented. Their right to remain ignorant is being honored. 

Will that practice stand? I predict that, as genomic testing becomes more precise and prognostic, failing to tell a patient about her genetic disease risks will be seen as being just as moral as neglecting to tell her about an aortic aneurysm discovered during an ultrasound examination for gallstones. Keeping people ignorant is rarely the right thing to do.

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  1. More important is whether patients and/or their caretakers will be legally obligated to notify insurance companies of genetic defects associated with an increased probability of future illness.

    1. I see some great opportunities for profit here. Let the doctors go on fishing expeditions in your genome looking for potential defects. A whole new universe of expensive treatment options for things you may have a 20% chance of contracting opens up.

      1. Or the IRS!

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  2. Of course you have the right to ignorance.

    Unless Bailey is suggesting mandatory testing, then just refusing to be tested covers it.

    Not surpisingly, it seems the ethicists are split between on one being allowed to know anything and it being mandatory.

    They have no concept of liberty.

    1. And reading the article, I found that for the first time ever Im agreeing with the ethicists.

      Personally, I want all the info, but I dont see why I should hold others to that standard.

      1. r: As I pointed out the testing companies already offer the ignorance option – but I am curious – do you think that a physician shouldn’t tell a patient about an aneurysm that they discovered by while checking for gallstones?

        1. If the patient specifically told him in advance not to, then yes.

          Without specific instructions, the doctor should do whatever he feels is best for patient, which would obviously be to tell him.

          1. Agreed. In a health care system dominated by doctor-patient interactions, this is clearly the way to go. Easily handled by contracts.

            However, what about the cases in which the disease is catastrophic and handled by insurance? In that case, shouldn’t it be up to whatever the insurance company wants to do? As I’ve pointed out below, insurance companies would be likely to tell patients that they’re required to get tested as a condition of having the insurance.

            1. Handled as part of the contract, as you said. If the patient agrees to get tested as a condition of the insurance, then they have consented.

              1. Sure. But what I’m saying is that I highly doubt the patient would ever have the opportunity to sign a contract which DIDN’T stipulate this. The incentives are too great for the insurer.

    2. I will be kegging and bottling booze this weekend. And drinking a bit of it at the same time I suppose.

      1. This weather isnt helping my saison ferment. I want low 80s in my garage and its low 70s right now.

        1. My brewing room in the basement stays 62-68 year round.

          Our forecast here in Iowa is rain Sat, Sun, Mon, Tues, Wed, Thu, and Fri.

          So, I’ll finally be able to get caught up on my bottling.

          1. My basement is normally 62-65, but that is way too cold for a saison yeast.

            I want low 80s, which will be a fusely mess with other yeasts.

            1. I’m not likely to make anything other than simple ales for other people. So, my basement is pretty much perfect for that.

      2. I kegged my whit and I’m not sure I’ll be drinking it. Used a hefe yeast and while it smelled bad fermenting, it smells worse now. No obvious signs of infection. It just smells rank. Like sweaty underwear. At least my attempt to make American Swill came out light and tasteless as intended.

        1. Sweaty undershirts or underpants? If like sweaty underpants, that’s a not-uncommon mode of secondary ferment’n that can occur after the fungi have died and bacteria work on their products. If like sweaty undershirt, then it’s gone lactic somehow.

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    3. it seems the ethicists are split between on one being allowed to know anything and it being mandatory. They have no concept of liberty.

      That’s the trouble with bioethics. AFAIK it started out as a completely libertarian area, all about protecting people from ? basically ? battery. But the problem is that doesn’t provide enough work for philosophers (some grey areas, but not enough to keep them busy for long), so they had to complicate things, delving into concepts of “autonomy” that were different from a simple conception of freedom, and finally, once their field was established, wandering all over the lot with ideas about what’s ethical.

  3. Wait until people start suing their doctors that they weren’t warned of genetic risks — although they did not want the info when disease-free.

  4. We would like to sell you some preventative medicine so we can bill your manditory coverage under this year’s reimbursement rates before they go down. Your odds are only 14%, but why take that risk?


  5. It seems likely that it will be become the default for people to get tested. Those on publicly funded healthcare systems will likely have to partake. The reasoning is pretty simple – screening reduces the chance of getting a disease by allowing for lifestyle changes, more frequent diagnostics, etc. It generally saves money over treating someone once they have a disease and public healthcare systems need to cut costs.

    Those with private insurance covering things will likely see their insurance companies demanding that they get this testing done. For the same reasons the public systems will demand it.

    It’s only those few who choose to forgo insurance who will likely be able to opt out.

  6. I think the really interesting question is how this affects the healthcare/health insurance model. If I can look at my genes and see that I have a basically 0% chance of getting some disease, why should I insure myself against that disease? On the other hand, if an insurance company looks at my genes and sees that I have a 90% of getting some other disease, why should they insure against it? For diseases with a strong genetic component, it seems like whole genome screening will likely eviscerate the insurance model in health care.

    1. If I can look at my genes and see that I have a basically 0% chance of getting some disease, why should I insure myself against that disease? On the other hand, if an insurance company looks at my genes and sees that I have a 90% of getting some other disease, why should they insure against it?

      Because the government leaves them with no choice.

      1. Right. I was going to say something about this. They’ve already fucked up the insurance model with the whole “no prior conditions” bullshit. Why not fuck it up further?

        1. And blame it on failures of the free market! Single payer ftw!

          1. I agree with you. But I do think that this may be an area where there really is a market failure and some of Tony’s claims might be at least somewhat valid. If I know with near 100% certainty that I will get a catastrophic genetic disease, there is no way that a private insurance company in a free market would ever cover me. It makes no sense for them to do so.

            1. If there’s a 100% chance that you’ll get a catastrophic genetic disease, what right to you have to force everyone else to pay for the treatment?

              1. Bingo. Armed with that knowledge you can start planning financially for the treatment of your illness. The government could even give you a nice little brownie in the form of a tax incentive for health care savings.

                Or, if you’re a quasi-statist who tilts libertarian on pot and porn only (which broadly covers a goodly portion of the Reason staff), you can have a government-run high-risk insurance program with eligibility only open to people at some high threshold for probability of a given catastrophic disease. Basically Medicaid, but your eligibility is determined by your genetic testing instead of your income (or perhaps both).

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  8. I see this as an extreme encroachment on personal liberty.

    I’m a Christian Scientist and forced testing, along with any forced “treatment” to ward off diseases I have no intention of getting, in spite of the Olympian assurance from the medical community that I am 100% doomed , is horrifying to me.

    Clearly Mr. Bailey and I have a different view of morality…

    1. It won’t matter what your view on morality is. As I’ve pointed out, it seems likely that the agencies that pay for the treatment, whether government or insurance, have a vested interest in making sure you get tested. It’s good for the bottom line.

      Is it bad for liberty? I don’t really think so. If it’s being paid for by government, then we’ve already lost that liberty. If it’s paid for by insurance, I don’t see a right to not know being more sacrosanct than freedom of association. Insurance companies in a free market would have every right to tell you no insurance if you don’t play by their rules. And they would be morally fine in doing so.

      Given that those are the only two likely outcomes (since we have such an entrenched link between insurance and health care), I’d say you’re pretty much SOL unless you pay for all your health care (including catastrophic damages) yourself. And there’s nothing particularly immoral about the agencies paying for the health care forcing you to do it.

      1. And there’s nothing particularly immoral about the agencies paying for the health care forcing you to do it.

        Actually, that is very particularly immoral.

        If you consent as part of a contract, then it isnt force.

        1. Of course, I don’t mean force in that manner. Using it colloquially. Here, force = they offer you no other option.

      2. If mari is a Christian Scientist, I doubt (s)he has much need for health insurance.

        1. If you can afford that religion, you can pay for medical out of pocket.

          1. Can’t tell if serious.

          2. Christian Science != Scientology. The former are idiots. The latter are rich idiots.

        2. Exactly. I’m forced to pay for insurance that I am not going to use.

          But that’s a rant for another day.

    2. m: With due respect, if you are Xian Scientist why would you be seeing a doctor at all?

      1. Well she’ll be compelled by law to carry health insurance, and insurance companies could require this.

        1. It’s not even just this. What if she doesn’t carry a card saying “don’t treat me” and ends up unconscious? There’s always a presumption in medicine to treat someone if they are incapable of consenting.

      2. Hi Ron,

        If it were up to me, I wouldn’t see a doctor. But how long will I have the right to “opt out?”

        Slippery slope…

    3. There is no forced testing here in that nobody is forcibly extracting a sample from you or forcibly submitting your person to some device. I think what is happening is that you choose to send in a sample to be tested for X, and the diagnostic company also happens to look for Y and Z in the same sample. The question is whether the diagnostic company should tell you that you have a problem with Y or Z even if that wasn’t the original target of the test.

      1. If its free, why not?

        Drug testing companies are still telling employers whether or not employees are abusing Quaalude, even though the abuse rate has been absolute 0% for years.

  9. People do not have the right not to be told anything. Sure, you can come up with a contract that specifically says otherwise, but in normal circumstances with health care a doctor will probably just tell you everything he knows like he is supposed to do.

  10. Some prominent bioethicists claim that the claim that the college’s recommendations violate your right to remain ignorant of your genetic risks.

    I think there’s one too many “claim that the” in this sentence.

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  12. This seems like solutions in search of a problem to me. At least until we reach the point where government requires such testing for their actuarial tables, and force you into treatment or force you to know your results. You can already opt out of additional information. And you should always be able to discuss the issue with your doctor ahead of time, and any doctor worth his ethical salt would respect your wishes with regard to informing you.

  13. Maybe we should look into your genes, Ron. There may very well be a mass murderer lurking around in there who could benefit in a very positive way from a little preemptive neurosurgery.

  14. Love these bio “ethicists”. They want to preserve your right to ignorance, but when will they come out for your right to knowledge, for your right to choose what to do with your body without having to get permission from an agent of the state first?

    Never. Tools of the state, justifying and sanctifying state control of your body.

  15. I’m confused as to who’s saying what here. Is the issue whether patients should be allowed to get certain genetic tests, allowed to not get them, allowed to get them but then not get the results…what? And who’s advocating what? I’m not that interested in checking, I’d’ve hoped Ron Bailey’s reporting would’ve clarified, but unless I’m being obtuse here, he’s left us in the dark. The right to ignorance of the issue?

  16. Mr. Bailey, you must surely know that of all the rights Americans hold dear, the right to remain ignorant us the dearest.

    Clearly, I should have studied bioethics instead of, well, ethics in graduate school. As far as I can make out, the process of bioethics is the same as that of proving a logical theorem: one begins with whatever one wishes to prove and then works backwards from there.

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  20. Why not report the lab results to the patient and let the patient decide whether they will tell that physician or not. Many times doctors are so poorly educated and foolish that they’ll tell patients a load of crap based on one test. I say let the patient decide when and which doctors get to view their medical records because doctors are too dumb and have too many conflicts of interest to be trusted.

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