Is your doctor giving you accurate information? Not in Pa.

Your doctor might be giving you false information. Why? Because it's the law.

According to a recent study conducted by a team of Rutgers scholars, many states – including Pennsylvania – require women having abortions to receive medically inaccurate and misleading information from their physicians.

The study team, headed by Cynthia Daniels, a professor of political science at Rutgers University in New Brunswick (we have coauthored several articles) collected informed consent materials from the 23 states that mandate that information be given to women seeking abortions. They had the statements in them reviewed by experts in medicine and in embryology and fetal development, who rated them for accuracy. The reviewers did not know that the materials' distribution was linked to abortions. They found that "nearly one-third of the informed consent information is medically inaccurate."

The project's website, InformedConsentProject.com, contains a link to the article, published in the Journal of Health Politics, Policy, and Law, as well as information about the authors, the research, and overviews of the accuracy of materials distributed by each state.

Pennsylvania is one of the 23 states (New Jersey is not). The Pennsylvania review found that nearly one-quarter of the statements made in the mandated materials was inaccurate, including more than 40% of what was said about the first trimester.

I interviewed Professor Daniels about the research and the findings generally:

The Public's Health:Why did you and your research team decide to conduct this research?

Cynthia Daniels: I've been teaching about abortion and the law for many years.  My undergraduate students would often ask me what information was contained in 'informed consent' packets produced by the states.  How much did they differ from state to state? Who wrote them? How do we know if they are biased?  I initiated this project, along with my team of co-researchers, in order to answer some of these questions.

Can you tell us more about your team of experts who evaluated the information?

Since I'm a political scientist, I didn't have the expertise to evaluate information about embryological and fetal development.  So I went to the American Association of Anatomists' annual meeting, where I recruited a team of seven anatomists to participate in the study.  Six were from the U.S. and one from Canada.  Three were female and four were male. Of those who reported their age, two were over 60 and three were between 50 and 60. They identified their professions as "college professor," "researcher," "embryologist," or "medical college faculty." Of the five who reported their years practicing in their field, their experience ranged from 25 to 45  years.  We feel we were very lucky to have such a highly qualified group of professionals help us evaluate these materials.

Can you describe how the process for assessing the accuracy of the information?

First, it is important to note that at no time did our experts know that they were evaluating materials related to abortion care.  We only told them that the information they were reviewing were given to women in "medical health facilities."  We felt that was important to reduce the risk of bias.  We also stripped all state identifying information from the information.

Following the standard set by the U.S. Supreme Court in Casey, which mandates that informed consent materials must be "truthful" and "nonmisleading," we created two 5-point evaluative scales. Our "truthfulness" scale contained possible scores ranging from 1 to 5, where 1 equaled "completely true" and 5 equaled "completely false."  We also provided an option of "unsure / don't know." We created equivalent categories for a 'nonmisleadingness' scale.  We defined "truthful" as "information that is scientifically correct." Nonmisleading was defined as information that "gives a correct impression."

What surprised you most about the findings? 

We were quite surprised by a number of findings, first, that nearly one-third of information was judged to be medically inaccurate.  Second, that the information was concentrated in the first trimester of pregnancy.  We were also surprised to find high levels of inaccuracies in both "blue" states and "red" states and across all geographical regions.  For instance, Michigan had one of the highest levels of inaccuracies.

Have you gotten any feedback from legislators or medical leaders since the article appeared?

In general, I have to say, people are quite stunned by the research.  They are surprised to learn that there are conditions under which doctors are required by law to present misinformation to their patients.  Many people find this alarming.

We have been contacted by a number of organizations and individuals who are also interested in the political implications of our research.  The National Partnership for Women and Families was very interested in our research as it relates to their"Bad Medicine"project that examines other areas of medicine where politicians have inserted themselves into the patient-doctor relationship. We also are meeting with legislators in Texas who have introduced legislation that would challenge that state's informed consent laws.  And recently, I was contacted by a womanworking for the state of South Carolina on the production of that state's informed consent materials. She wanted to know how she could make sure that their materials were medically accurate.  We expect to hear more from legislators, advocates, and administrators in informed consent states.

The American Medical Association's Code of Ethics states that "The patient's right of self-decision can be effectively exercised only if the patient possesses enough information to enable an informed choice."  It goes on to say that "The physician's obligation is to present the medical facts accurately to the patient." Have medical providers mounted any legal challenges to laws that require them to give inaccurate information?  

The most recent challenge to informed consent laws was in 2012 in the "Rounds" decision.  Physicians challenged, as a form of "forced speech,"  a provision that required that they tell their patients about an association between abortion and increased rates of suicide, an association they felt was completed unsupported by  evidence.  The court ruled against the physicians, though, stating that the risk of suicide passed the standard of "proof" because there could be a possible correlation (even if not causation) between the two.

There has been some talk about bringing a new challenge to these laws based on our research that would focus on the principle of medical malpractice—where states force physicians to provide inaccurate information to patients.  That discussion is still in the very early stages.

How does the required dissemination of medically inaccurate information undermine the doctor-patient relationship?

Well, at the foundation of that relationship is trust.  Requiring a doctor to deliver misinformation to patients is a profound violation of that trust.

Are there any other medical procedures for which physicians are legally required toprovide inaccurate information?  Do you see this as a dangerous precedent?

I don't know of any other medical procedure where physicians are required to provide state-authored information to their patients.   So, indeed, this could set precedents that are concerning.

Are you planning any follow-up research?

We would like answers to a number of other questions: How do states produce these materials?  How do doctors present material to patients? What impact does this information have on the experience of patients?  What levels of inaccuracy occur in information about medical risks associated with abortion and pregnancy?  We hope to continue to pursue these lines of research.  Stay tuned to our website for news about our follow-up research.

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