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.