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Legislating Lies: Kansas and Other States Pass Laws Permitting Doctors to Lie to Pregnant Patients About Prenatal Diagnoses

The ongoing war on reproductive rights in the United States is so sweeping that I’m constantly uncovering a new facet of it, appalling in its grossness and determination to strip pregnant people of all individual freedom and autonomy. Odd, coming from conservatives who claim to want smaller government; evidently tight governmental controls are perfectly acceptable when it comes to people who can get pregnant, who will clearly run into trouble if allowed to make their own medical decisions.

Or, it turns out, receive factually correct information about their diagnoses. In Kansas, there’s a clause buried in an anti-choice bill that would absolve doctors of legal liability if they lie to patients about prenatal diagnoses. That means that an anti-abortion doctor could receive test results and decide not to pass them on, or lie about their nature, which means that pregnant patients might not find out about fetal abnormalities until they become dangerously ill late in pregnancy, or until delivery, when they learn that the baby has significant health problems.

Kansas isn’t the only state that’s doing this; Oklahoma and Arizona have both passed similar laws. Anti-choice tactics tend to spread like wildfire, so it’s safe to assume that other states will be following suit.

This creates a fundamental breach of trust between patients and care providers. How can you trust anything your doctor says about your pregnancy if you’re in a state with such a law? Even if you do your research carefully, how can you be sure that your doctor will provide you with information about your pregnancy? What if you’re living in an area where the closest accessible OB-GYN, or the only doctor covered by your insurance, is anti-abortion, forcing you to see that care provider? And how can doctors, who pledge to ‘do no harm,’ take advantage of such a law to conceal critical medical information from their patients?

It is vital for patients to receive results from prenatal testing in a timely fashion. On a purely basic level, these tests are about what is happening inside their own bodies, and they have a right to know what is going on; just as patients should be told when a culture reveals that they have an infection, or a urinalysis shows signs of severe bladder inflammation. Medical tests are ordered for the benefit of the patient, and patients have a right to see those results and have them explained.

In the case of prenatal testing, if tests reveal signs of an anomaly, it’s important to have some followup tests to learn more about the situation. The patient may need to see a specialist for further evaluation, and could need to meet with a geneticist to discuss the diagnosis and its implications. If a doctor notices something odd on routine testing, doesn’t tell the patient, and doesn’t recommend any kind of followup, this means that a diagnosis will never be made, let alone confirmed, which means the patient won’t be operating with all the necessary information when making decisions about the pregnancy.

For some patients, this can be fatal; some conditions may result, for example, in fetal death, which could lead to severe infection. They could cause a spontaneous miscarriage which would leave a patient at risk of hemorrhage and other complications. This may be a threat to future fertility, as well.

In other instances, lack of information means that health providers and patients can’t prepare for labor and delivery. A high-risk pregnancy requires some special precautions; a patient who thinks a pregnancy is progressing normally might choose to deliver at a facility that doesn’t offer the level of care needed, which would endanger the baby. Conversely, if there’s a significant heart defect, for example, choosing to give birth in a hospital with excellent neonatal care options allows the baby to be whisked to surgery for treatment. Someone might not make that choice, or might learn it’s not covered by insurance, if there’s no diagnosis to indicate the need for such precautions.

When patients know what to expect, they can prepare for it. They can seek second opinions to confirm the diagnosis. They can learn more about the implications of the diagnosis and develop an appropriate birth plan to ensure the baby gets the right care from the start. They can meet with people who share that diagnosis to learn more about their lives and the various options available. They can start lining up assistance to help them with the new baby, and can determine if they are eligible for benefits and other forms of support if they’re low-income or not in a position to care for the baby on their own.

In other cases, prenatal diagnostic information may lead to the decision to terminate a pregnancy for the safety of the patient, or due to concerns about fetal and infant health. Some fetal abnormalities are incompatible with life, which could lead to fetal death or death shortly after birth. Others lead to severe medical problems shortly after birth. In a world with limited support for babies outside the womb, parents may be forced to make difficult choices because they know they cannot afford to care for children, even if those children are very much wanted. The decision to abort for disability is not necessarily made out of a callous hatred of disability, but out of practical concerns about the quality of life parents can offer the child.

People don’t take any particular pleasure in making this choice. It’s a choice that requires as much information as possible, from care providers they can trust to be factually correct, accurate, and informative. If the law permits lying to patients, you’re going to be left forever wondering…and it’s telling that the majority of women of reproductive age, those most at risk from these laws, live in anti-choice regions of the United States. We are reaching an era where I am starting to think that we need to encourage people to leave their states for the duration of their fertile years so that they can access unbiased medical care.

Patients cannot make informed choices without information. What’s particularly galling about initiatives like this, which allow doctors to lie to their patients, is that many of them are advanced under a pro-disability guise. The claim is that they are preventing abortion of ‘precious angels’ who might otherwise be cruelly murdered by their heartless and evil parents. The anti-abortion movement is fond of using disabled people as pawns, suggesting that only it truly cares about us because it will defend us from the evils of abortion; even if that means endangering parents, and babies, for that matter.

Curiously, these same people reject all requests for social assistance for people with disabilities and have no interest in supporting us once we’re born. It’s hard to take these claims of caring about disabled people seriously when they involve passing legislation that allows doctors to lie to patients, and when the same legislators turn out to vote down bills designed to make it feasible to raise a disabled child. Lawmakers who have disabled children use them as props to show how compassionate and loving they are, unlike those evil pro-choice people who want to go ’round eliminating people with disabilities. They ignore the fact that their children access a very high quality of care because of family wealth and eligibility under government benefits plans, which makes the decision to have a disabled child a lot easier; you don’t have to think about the role money will play, and can focus on your own level of personal preparedness.

The tide of anti-choice legislation is appalling, and it must be stopped. The arguments used in defense of this legislation are usually painfully and transparently wrong, and this case is a shining example. This isn’t about disability: It’s about controlling people who have the ability to reproduce.

And it’s disgusting.

11 Comments

  1. Megpie71 wrote:

    Hang on a minute here – there’s seriously a proposition in place to permit doctors to lie to their patients in order to permit said patients from requesting a pregnancy termination?

    Have the nincompoops making these laws heard the phrase “flagrant breach of medical ethics” before?

    Basically, these people are saying that in order to safeguard the theoretical “rights” of a thimbleful of cells in a handful of cases, it is appropriate for the entire medical profession in Kansas to become associated with unethical behaviour. It is appropriate for all women in Kansas to be lied to by the medical profession, for their trust to be abused, for their autonomy as human beings to be disregarded, for the concept of “informed consent” (which I thought was both a legal and an ethical concern) to be declared not to apply to an entire gender. It’s about reducing women to the level of domesticated animals.

    Monday, March 19, 2012 at 2:54 pm | Permalink
  2. Rhonda Carlson wrote:

    Yes, that’s exactly right. Dear God. Why aren’t we in the streets regarding this? It’s so unbelievable that I’m finding no one is taking me seriously when I post it on facebook. I think they just assume that it’s an urban myth. We HAVE to get the word out. Where the hell is the media on this one? Maddow is the only one who has touched it.

    Monday, March 19, 2012 at 9:00 pm | Permalink
  3. Malisha wrote:

    You’re right, it is disgusting. And it’s nice to read a piece by someone who can write coherently on a difficult subject.
    I have a deep and abiding hatred of many ostensibly feminist responses to pieces of legislative garbage such as this, which ranges from denying that disabled people are sometimes also people with uteri who are affected by this kind of violation of human rights, to saying things like “we need to fight this legislation because disability is always bad and we should do everything we can to stop it.”
    The bottom line is: WOMEN need to be making these decisions, not the damn government (and sadly, these things are seemingly mutually exclusive in the US.)

    Monday, March 19, 2012 at 10:17 pm | Permalink
  4. Romie wrote:

    I read some years ago that a number of medical schools had stopped accepting students who graduated from Kansas high schools because of how inadequately biology is taught there (also known as creationism). So I don’t know how much longer Kansas will have any doctors at all. A generation?

    Tuesday, March 20, 2012 at 2:41 am | Permalink
  5. Megpie71 wrote:

    My cynical side did a touch more thinking about this one last night. I suspect it’s going to backfire on the writers of this legislation in a nasty way, because it effectively provides a legal justification for giving a patient inaccurate information about their pregnancy status (and the status of their pregnancy). I have no doubt there’s at least one person out there who is busy thinking of ways this can be used to prevent “the wrong sort” from having children or starting families.

    So, is anyone aware whether Kansas is one of those states which has a long list of legally unacceptable everyday behaviours for pregnant women? (For example, drinking alcohol, or smoking cigarettes – where if they’re carried out, they’re classified as a form of abuse). If this is the case, then I can see a nice little line in withholding correct results for pregnancy tests from “the wrong sort of woman”, as a way of getting “those sorts” in trouble with the law.

    Or, of course, there’s the “classic eugenics” version, where incorrect information is given to a woman with the aim of pushing her to obtain a termination. Given the amount of difficulty women in Kansas now have to undergo in order to obtain a legal termination of pregnancy, this means a greater demand for illegal, unsafe abortions; the type which are more likely to kill the woman in question, or cause permanent damage. A classic method of preventing the “wrong sort” from having children.

    (I wish I didn’t have the sort of mind I do. I’m sure I’d be happier as a result).

    Tuesday, March 20, 2012 at 4:01 am | Permalink
  6. melissa wrote:

    Wow.

    I really hope, though, that doctors will KNOW that unchecked fetal anomalies may cause harm to both the mother and child and thus act on it.

    Lawmakers might have no clue and pass laws about whatever they want, but I would be flabbergasted if doctors everywhere suddenly decided that it would be a good idea to lie. From the last story of the woman who had to abort for this very reason, it sounded like every medical professional she encountered was actually on her side and very concerned for her wellbeing. I’m going to hold on to that little grain of hope for the time being.

    Doctors, please don’t lie. Just because the law suggests that you can, doesn’t mean you should. So that I can keep on believing that just because the law suggests you can, doesn’t mean you will.

    Wednesday, March 21, 2012 at 1:08 pm | Permalink
  7. sam wrote:

    I think these policies are directly linked to the devaluation of and hatred towards women of color in these areas, specifically immigrant and indegenous women. Prevailing racist ideologies about the “over-reproductiveness” or “hyper fertility” of “those brown women” inform decisions made in the largely white, male, hetero power realm of the medical industrial complex, which is in bed with state legislators. To me, it looks like a genocidal legislation meant to maliciously misinform women of color–or otherwise “mis-reproductive” women about their bodies and hope that they have birthing complications. It is a way of punishing them for their sexuality.

    Wednesday, March 21, 2012 at 3:00 pm | Permalink
  8. GGeek wrote:

    So with one set of these anti-choice laws – those requiring ultrasounds, parental notification, requirements to tell women about a non-existent link between abortion and breast cancer/infertility – we’re told that the laws are just “so women have all the information before making their choice.”

    And on the other hand, we have these sorts of laws that destroy patient-doctor trust and actively WITHHOLD information from women in these circumstances.

    Good lord, if I wasn’t so utterly appalled, I’d almost be impressed.

    I did finally read a response from an actual doctor about what zie thinks about all this and what zie encourages other physicians to do.

    Here’s the link for those who need a bit of a boost amidst all this negativity:

    http://whatever.scalzi.com/2012/03/20/guest-post-a-doctor-on-transvaginal-ultrasounds/

    Wednesday, March 21, 2012 at 9:13 pm | Permalink
  9. SoRefined wrote:

    @Romie

    That seems highly unlikely, since people generally go to college and earn a degree in a related field before applying to med school, and high school biology classes, even the best ones, aren’t really adequate prep for med school.

    On the subject of Kansas specifically, creationism is not taught in schools, as that’s rather illegal. I am sure people are trying to get ID nonsense in, but I don’t know how successful that has been.

    I know Kansas was/is famously a subject of ridicule for “trying to outlaw the study of evolution” in state (high school) science standards, not only did that not actually get accepted, the state BOE members who were into that all got kicked out in the next election.

    Sunday, March 25, 2012 at 1:19 pm | Permalink
  10. Rhonda Carlson wrote:

    Although Kansas, at one time, struck down the school board revisions in regard to teaching Creationism, it’s a whole new world right now in the state.. Because of a sort of blind “vote Republican” atmosphere there, the party has moved to the extreme right. Yes, there are many free thinking Kansans…I’d like to think I’m one of them; however, the legislature is so dominated by the Tea Party, there’s little hope of any moderate behavior. Stay tuned. I wish KU would scream about this legislation from the top of the mountain, but, like everyone else, they’re scared to death that their funding will be pulled. Like so many other movements, the “bad guys” take over when the “good guys” aren’t looking. And then it’s just too late.

    Tuesday, April 3, 2012 at 12:21 pm | Permalink
  11. Carli wrote:

    I have had personal experience with this law. I live with my boyfriend in oklahoma, and I am seventeen years old. I am on birth control and we wore a condom, but the condom broke and the birth control failed. I am now well past six weeks into pregnancy, and am planning on an abortion. I have gone to two different planned parenhood centers in Oklahoma, with the knowledge that all five pregnancy tests have come out positive. Each doctor asked me BEFORE they went to see if it was positive or not, if I was planning on keeping it, putting it up for adoption, or planning an abortion. I trusted them and said that I was planning an abortion. They both went back and came back with the response that I am negative on the test. Even though I am three weeks past my period, have had morning sickness for the past two weeks, have basically every single symptom of pregnancy, but they will not allow it. I am now having to go outside of the state to recieve proper treatment, but now I am so distrusting that I am going to most likely lie to the doctor when they ask before checking so they will be honest with me. We have no money nor place at the moment to support a child, not to mention I do have certain bodily problems that would definitely be a danger to the child

    Friday, April 13, 2012 at 10:47 pm | Permalink