Prenatal testing during pregnancy is offered with the goal of identifying medical conditions that affect a fetus. Some of these medical conditions can be treated, other times knowing about the diagnosis in advance will affect how or even when the delivery occurs, and sometimes a condition is identified that leads a woman to choose an abortion. Although women in Pennsylvania, North Dakota, South Dakota, Utah, Idaho, Indiana, Missouri, Minnesota, North Carolina might not get to hear all of their medical information.* (Make sure you read my addendum below). In these standard bearing states for misogyny a doctor is allowed to withhold information that they think could lead to an abortion and not be sued as a result. These are called “wrongful birth laws” and they allow doctors to put their own personal beliefs first, free of legal repercussions. Arizona hopes to be the 10th state to legalize this malpractice (Senate Bill 1359) and it should come as no surprise that Kansas is also considering this legislation.
“Wrongful birth” lawsuits are filed when a woman does not get medical information that had she known about during her pregnancy, would have led her to choose an abortion. When successfully litigated, they typically involved large judgements as the women can sue for the costs of lifelong care for a profoundly disabled child. Historically, these lawsuits have been filed when A) there is a mix up in record keeping and the results of a test are lost or B) a pro-life doctor doesn’t disclose medical information in order to prevent a women from considering an abortion. Both scenarios are bad, but for entirely different reasons.
But it gets better. The Supreme Court refused to hear a challenge to the Pennsylvania law (why this hasn’t been in the news more these past 20 years makes me batshit crazy). Yes, apparently women are not free in this country to receive all of the necessary medical information to make an informed decision. If that doesn’t say war on women, I don’t know what does.
In my opinion, State medical societies should immediately respond with a loud and clear message. That any physician who withholds medical information from any patient based on the physician’s own religious/ethical/personal beliefs will lose their medical license.
This is the thin edge of the wedge. It is a state sanctioned return to the days of patriarchal medicine, you know, when the little lady couldn’t possibly make an informed decision.
This war on women by way of intruding into the practice of medicine (by the party of smaller government, no less) is wrong and must not be tolerated.
Speak up and be heard.
This weekend I plan on writing to the San Francisco Medical Society, the California Medical Board, and the American College of OB/GYN. What do you plan on doing?
Addendum*
One commenter (a lawyer, I assume, and thank you) astutely pointed out that part D of the bill reads as follows:
THIS SECTION DOES NOT APPLY TO ANY CIVIL ACTION FOR DAMAGES FOR AN INTENTIONAL OR GROSSLY NEGLIGENT ACT OR OMISSION, INCLUDING AN ACT OR OMISSION THAT VIOLATES A CRIMINAL LAW.
The commenter suggested that a doctor intentionally keeping back part of the medical record would still be legally liable. But it is never as obvious as that. In my experience, what happens is the screening ultrasound (part of prenatal testing) is ordered later than normal (say after 20 weeks). At this point should a severe anomaly be identified, by the time all the information is available it would be too late to have an abortion. I have seen pro-life physicians order ultrasounds this way and have also seen it happen out of sheer stupidity on the physician’s part. Both of which I think should be considered malpractice, but I guess wouldn’t be if I understand the bill correctly.
It is these”soft calls” that I see the law protecting. I’m not a lawyer, but not telling a patient that she needs to have her prenatal scan done by a specific gestational age if she were to want an abortion based on anomalies is withholding information. There was a well known case where I was a medical student of an OB that talked all his patients out of getting prenatal testing because they were “not reliable.” One woman who believed what he said had a baby with Down syndrome and sued for wrongful life and was ultimately successful. However, technically one could say that prenatal tests are not reliable because they are screening tools and designed to have a significant false positive rate. Under the Arizona bill, that woman might not have a case.
While I agree, doctor’s who get a positive result back and refuse to tell their patients about those test results (i.e. withholding the actual medical record) would not be protected by the bill (although you just never know), I believe that it offers protection to those doctors who perhaps explain tests with less “clarity.” And to me, that’s withholding medical information.
It’s a slippery slope.
Dr. Jen Gunter 
Is a physician obligated to tell me if he or she would deliberately with hold information in order to avoid the possibility of an abortion, if I ask? What would be the best questions to ask an OB or CNM on this issue while deciding on a practitioner?
Speaking from the UK here – WOW! I am amazed and horrified to read this, what a total violation of womens’ rights. It seems that women and particularly pregnant women just aren’t considered able to make their own decisions by some doctors. Truly shocking in the 21st century. Good luck to everyone fighting this.
Good article, Dr Jenn! There should never be any discussion over what a health provider decides to tell a patient. I have heard discussions going on in health care institutions on whether a provider tells a patient when they find Creutzfeldt-Jakob disease exists. Just like hiding information about a fetus from a mother, why would these discussions ever go on in a health care institution.
I can see where there is certain mental health diagnosis that may be a reason to withhold information from the patient. But there should be efforts to make a close relative aware.
Having read most or all of Dr Gunter’s posts, I have never seen anything in them, anywhere, that would support the notion that she thinks “a woman should be uninformed.” I don’t understand how jlue comes to this conclusion.
Nor is Dr Gunter saying that a single prenatal ultrasound is the gold standard for determining the presence or absence of all relevant abnormalities. The original post, update, and her replies in the comments indicate to me that she wants the ultrasound to occur in a timely fashion. That way, there will be plenty of time for the followup testing that would follow a worrying ultrasound.
You know, so that a woman has all of the relevant information and can make an informed decision.
Marlene: I believe that most doctors would not intentionally hurt their patients.
HOWEVER: A person who is so anti-choice as to fudge things like the right time period in which to have an ultrasound screening, as Dr. Gunter suggests, is a person who would see that action as PROTECTING the patient. Or, rather, protecting the fetus, which is that person’s higher priority.
This is what a lot of people on the science/rational/pro-choice side don’t understand, or at least, don’t understand the depths, the extremes, of. My mother and sister are fundamentalist evangelicals, and they would support any tactic that would “save” even one “baby” (to them, it’s never just a fetus) — a doctor who lies, acting in the old paternalistic fashion, would be A-OK with them, and to have this sort of dangerous shenanigans (up to and including outright lies, e.g. showing a woman with abnormal results the pictures and numbers from someone else’s normal ultrasound, etc.) legally protected would be, to them, both right and righteous. That’s why this is so scary — we’re not fighting the same fight here, at all.
Are you saying that women should be not be told that prenatal testing is not always reliable? What about women being intelligent enough to use information to make their own ‘wise’ decisions? According to The American Pregnancy Association on testing done in the first trimester:
and read what it says here:
http://kidshealth.org/parent/system/medical/prenatal_tests.html
If a woman is so concerned about having a child with an abnormality that she will abort at any slight risk, adoption might be a better choice for her. Life is not without risks, but test are often wrong and many healthy children will be sacrificed if every mother aborts when a tests comes back as a possible risk.
I am against abortion, but certainly wonder why anyone would think a woman should be uninformed about the unreliability of prenatal tests.
I would urge a note of caution: the Arizona bill in question, as well as the analogous statute in at least one of the other states you listed (I haven’t looked them all up), does not in fact protect doctors who “withhold[] medical information from any patient” for the purpose of preventing an abortion. Instead, they only protect doctors who do this negligently. If a doctor intentionally withholds the information in question, the Arizona statute specifically does not protect him or her from liability. As clause D of the bill you linked to provides:
(Sorry about the all-caps; apparently Arizona legislators shout all their bills at the top of their lungs.)
The way you describe the doctor’s conduct here–“withhold[ing] information that they think could lead to an abortion and not be sued as a result”–is pretty clearly a description of intentional conduct, so if those are indeed the facts, the Arizona law (and the statute in at least one of the states you’ve named in this post) would not actually protect a doctor who behaved that way.
The caveat worth noting is that it would be the parent/plaintiffs’ burden to provide evidence in court that the doctor intentionally (or grossly negligently), rather than ordinary-negligently, withheld the information in question. That’s not nothing, and as a result these statutes are a legitimate matter of concern. But the notion that the statutes permit a doctor to hide medical information at will is seriously misleading, if not downright false.
Thanks for your comment.
Perhaps my use of intentional doesn’t fit the legal definition. But what I see happening is the OB who orders the ultrasounds later, at 20 weeks instead of at 18 weeks. Or the OB who couches his discussion of prenatal testing in a way that leads a women to decline it. I have seen the later ultrasound bit many times. The ultrasound is performed at 20 or 21 weeks, a severe anomaly diagnosed, and by the time the results are back it is too later in that state to have a procedure. I imagine what I might consider intentional and “hiding information,” another provider would argue to be “a judgement call.”
It is a slippery slope.
I agree, Dr. Gunther, and I appreciate the information about how a doctor might accomplish withholding information in an apparently legal fashion.
Frankly, “intentional” makes no sense, anyway. I would think that very few doctors intentionally hurt their patients, and if one does, isn’t that a crime, rather than just malpractice?
I don’t know why I am not surpised to read this, but it makes me very angry to see that women are being treated this way. I will be writing to my legislators.
Well, maybe it’s these women’s personal beliefs that they shouldn’t pay doctors who have malpracticed against them. Wonder if that would start opening eyes. If he’s not practicing medicine as a doctor should, why should he get paid for it?
Dr. Gunther,
With the increased availability of electronic health records systems (through federal EHR incentive payments from Medicare and Medicaid) and a push (through “meaningful use” criteria that must be met to receive those incentive payments) to provide increased patient access to electronic copies of their records, are you aware of any healthcare organizations that are programming their EHRs to filter out such information as a woman might use to make a decision on abortion?
“any physician who withholds medical information from any patient based on the physician’s own religious/ethical/personal beliefs will lose their medical license.”
That’s how it should be. Lying to, or even simply misleading, patients is irtresponsible at best. It is certainly deeply unethical and brings medicine down to the level of quackery. There are other, more scary parallels, but right now I don’t trust my self-restraint to comment on them.
When I was pregnant with my daughter, I was put on bed rest for the last 28 weeks of my pregnancy because my blood pressure was elevated. As a result, my labor was induced 2 weeks early with a blood pressure of 180/110 before my labor pain even began. I feel blessed that both of us survived. My OB doctor asked me why I had not been put on an aspirin regimen and I thought to myself,”could something that simple really prevent all that agony?” After much research and debate, I decided that a low dose aspirin was safer than the alternative. At least this time around I had a choice. My blood pressure stayed normal throughout the entire pregnancy and I didn’t have to rest until the last week. What did bother me is that during my second pregnancy, the doctor prescribed an antidepressant which was known at the time to cause birth defects. When I asked him why he chose this medication, his reply was, “the mother’s health is more important than the fetuses. If the fetus is malformed, you can always abort.” I was both shocked and horrified! Wouldn’t a referral to a psychiatrist be the first step? We are supposed to stop smoking and drinking for the health of our baby. These are sacrifices we make out of love. Using this logic, wouldn’t it be safer to learn how to deal with depression instead of inflicting grave conciseness on someone so innocent?
In any matter, ultimately it is the mother’s choice of whether she should continue the pregnancy. As a Christian I believe that miracles can happen. We can learn to love, have compassion, sacrifice, and become a better person even through the difficulties of caring for a disabled child. By terminating a pregnancy it is like telling God that we are in control and we will pick and choose what we can handle and how we can handle it. How arrogant! And in the process we never become the person we are intended to be.
Thank you for your comments; however, I am not sure how they relate to a doctor withholding medical information. Just like you did your own research on aspirin, all women deserve access to all of their health information so they can research and decide what is best for them and their family.
I’m confused. Maybe I am misreading what you are saying. However, it sounds as though you are saying women have a choice, but that we are arrogant and never become the person we are intended to be if we terminate. Can I ask for clarification?
If the data showed that aspirin could prevent preeclampsia, we would just add it to prenatal vitamins. It does not. There are some studies that show that it may reduce the risk in some women who are at very high risk to begin with, but it has never shown benefit in a low risk population, which I assume you were part of at the beginning of your first pregnancy. As for the antidepressant, that is not clear cut either. Assuming you are talking about the more commonly prescribed antidepressant classes, some studies suggest some may increase the risk of cardiac abnormalities but some do not, this is not a question that has been satisfactorily answered. However women with treated depression have better outcomes than those not treated. Although the comment from your doctor, assuming you are quoting him accurately, is insensitive, treating a pregnant patient with depression is often best for both mom and baby.
I am sending a letter to my state officials, the governor and the state medical board.
I just emailed my state representative and both senators. Below is what I sent in case anyone lives in one of these states and wants to send a similar message:
—
Representative Burton,
I am very concerned about an issue affecting women’s health care. For some background information, please read the following article:
https://drjengunter.wordpress.com/2012/03/10/9-states-have-legalized-malpractice-against-women-arizona-hopes-to-be-the-10th/
I hope you are able to tell me that this is not true or that the author got some facts wrong. However, if that’s not the case, then I am shocked and ashamed that my own state of Indiana is listed among the other states that condone medical malpractice.
No matter where we might fall on the spectrum of the abortion debate, lying to pregnant women is not the answer.
Can you please confirm whether this is true in Indiana, and if so – what you plan to do about it?
Sincerely,
Michael Reynolds
I had no idea this was so pervasive, and I’m appalled it’s considered legal. Losing my patience with the legal system; it’s too easily manipulated with those on a mission.
How on earth is this compatible with the Hippocratic oath? Has the AMA (or other such groups) made an official statement on this?
Dr. Gunter, I completely agree and this is why I don’t believe that the U.S. government has any place in private healthcare other than regulating a fair protection of the consumer. Certainly, I think everyone can agree that middle aged lawyers who won a popularity contest in their communities, likable as they are, are not physicians and not qualified to mandate or require anything dealing with insurance policies or provisions. To think that the baboons in congress could manage any type of universal healthcare that is worth a salt while they can’t even agree on birth control or in this case the release of information to the patient is ridiculous.
Lowther3,
I practice Ob/Gyn in Canada under a universal healthcare system funded by a single payer, the federal government through transfer payments to provinces that implement their own medicare coverage for residents. Standards of care are NOT the jurisdiction of the government to decide based on whim, but are determined by physicians and their governing speciality bodies. (Unlike HMOs, where the clipboard ladies decide whether your chemo or back surgery is covered.)
The insanity that I see happening in the US boggles the mind. The government shouldn’t, and in MY (universal-healthcare) world DOESN’T (with rare exceptions) intervene in decisions between a woman and her doctor about contraception and abortion. If it’s deemed “medically necessary”, it’s covered.
Agreed, I’m not sure how the baboons in your congress would manage it, but know that it’s not complete fantasy and can be made to work.
Well said.
This is nothing less than outrageous. If women don’t wake up to this and do something about it, then I don’t know what is wrong with us. I can only be thankful that I don’t live in any of those states, but in solidarity with the women who do, I will do as you say and make my voice heard that this is NOT an acceptable way to treat women in the 21st century in the United States of America.
Dear Dr. Gunter,
I had to read your article 3 times because I couldn’t believe what I was reading. Even though I can’t have children, I am just as outraged.
I was a part of the Women’s Liberation Movement. We will not go backward, and we will change this ridiculous attempt to bring women down.
Right now, the best thing to do would be to do the research in advance. I also would have some legal documents for the Dr.to sign before I made the decision as to whom I would trust with my prenatal care.
Thank you much for this important information. We The People will make all changes necessary. It’s just a matter of time. Women might lose a few battles, but we WILL win the war on women.
Respectfully,
A. Rose
It was for this very reason one of my first questions to my midwife and asked of her back up doctor was – are you guys pro-choice? How did they handle fetal abnormalities? And if a termination was needed how would they handle that? The Nurse-Midwife handled these questions well but I still made an appt to see the 2 back up doctors and ask them about their policies. I could tell that she thought I was a little nutty but she answered my questions with alacrity and was more than willing to set up an appt with the other 2 docs so I could pose these questions to them also. To be honest my husband was a little irked by these questions also but I didn’t want my midwife and docs to be anti-choice and me and my pregnancy get caught up in anti-choice lies that could end up with my husband and I having astonishingly few choices in regards to a doomed pregnancy.
But the fact of the matter is I shouldn’t have had to be this through, I shouldn’t have to worry about my doctor lying to me about the state or health of my pregnancy, just because they think it could lead to an abortion.
Wow these are really good questions. I would want my daughters to ask them.
Dear Dr. Gunter:
I’m in complete agreement with your views and want to make them known to the appropriate groups who, I hope, will take a stand against this war on women’s health. Who should I contact, and what resources and facts should I refer to in my communications? Thank you for such an informative, positive and powerful blog!
Zoot!
Ursula OrElse
I just heard about this yesterday, regarding Arizona. That was bad enough, but i’m horrified that this law has been on the books of other states for years.
I’m curious to hear your perspective on how most doctors view this. Is it a common thing for doctors to withhold information from a patient? I would think the very idea would be anathema to most of them.
Unless most doctors really do think they are gods and the rest of us are just lesser mortals.