You may decline prenatal testing, but you may be choosing to be sued if you do

Last week, Art Caplan, a well-known bioethicist, wrote a post for Harvard Law’s Bill of Health blog. The post prompted one commenter to write, “Caplan, you are a laughable clown.” Whatever did Caplan write?

In Caplan’s words, there is a “mini-epidemic [of measles] raging in Brooklyn” and “breaking out all over Britain.” Caplan attributes the outbreaks to parents’ failure to vaccinate their children, which leads to his conclusion:

Maybe it is time to get tough on those whose choices put others at risk.

How to get tough? For Caplan it is making those parents who choose not to vaccinate their children subject to a lawsuit:

When the subject is vaccines a tiny minority continue to put the rest of us at risk. We are willing to let them choose to do so without penalty. That should change. If I know you or your kid made mine sick because you chose not to vaccinate then you should bear full responsibility for the harm you knew or ought to have known could happen.

The comments raise many points to contradict his argument.

Vaccinations do not result in 100% resistance to the disease. In the British outbreaks, measles has been passed from the vaccinated to others who were already vaccinated. Conversely, Caplan notes that in Brooklyn, Jewish children whose parents did not vaccinate passed the measles to other religious Jews who were not vaccinated. Further, a commenter shared links suggesting that these really are not outbreaks, but rather natural cycles of the disease in the population.

So, the entire premise for Caplan’s argument–outbreaks justifying lawsuits by parents who vaccinated against those parents who did not vaccinate–has been challenged: these aren’t outbreaks and the mini-epidemics are not due to a vaccinated child becoming infected from an unvaccinated child passing the disease.

Given the focus of this blog, I wanted to feature Caplan’s post for another troubling aspect: the threat against exercising personal choice for medical procedures.

Caplan notes that state laws allow parents to choose not to vaccinate their children. Moreover, he says: “I think there should be a right to decide not to vaccinate your child.” “But,” Caplan continues, “we have been far too lenient in putting up with the consequences of that lousy choice.” So, let’s respect personal autonomy, but have patients exercise it under threat of being sued if they make a choice others disagree with. How free are you to choose if your choice makes you subject to a lawsuit?

Do you see how this may apply to prenatal testing for Down syndrome?

I’ve written on this blog and elsewhere how prenatal testing for Down syndrome is based on patient autonomy. Prenatal testing provides an expectant mother information upon which she may choose to exercise her reproductive choice of either continuing or terminating following a diagnosis. In practice guidelines and commentary on prenatal testing, the woman’s right to refuse prenatal testing at any point is emphasized, because her autonomous decision to deny testing should be respected. But, Caplan’s argument is one that can be applied to prenatal testing and, when it is, how much is the patient’s autonomy truly respected? How much choice does someone have if choosing one option means choosing a lawsuit?

The threat of legal liability is one of the reasons prenatal testing is offered and guidelines are written the way they are. The very first prenatal screening test, alpha-fetal protein or AFP, is a useful test for open neural tube defects, like spina bifida. But when it was first introduced, ACOG issued a statement saying it was too inaccurate to be used as a screen for Down syndrome. Then, a family sued a doctor after their child was born with Down syndrome for not having offered them AFP testing. ACOG issued a “Liability Alert” to its membership reversing its position and not only stating that AFP should be offered to screen for Down syndrome, but that the patient’s decision to accept or deny testing should be documented in the patient’s medical record. That way, the obstetrician would have a written evidence that they had offered AFP testing should the patient later sue for wrongful birth.

Liability and prenatal testing have been intertwined like the DNA molecule itself. The ACOG liability alert, wrongful birth lawsuits being recognized in most states allowing patients to sue because they were not told prenatally their child would have Down syndrome, and practice guidelines requiring that patients be counseled about terminating their pregnancy following a diagnosis so that the medical provider can avoid any legal liability should a child with Down syndrome actually be born in this era of prenatal testing.

As the uptake of prenatal testing increases with the introduction of NIPS, how long will it be before Caplan or someone like him says, “sure, parents have a right to decline prenatal testing, but society has been too lenient in putting up with the consequences of that lousy choice.” As the Medicaid rolls are expanded, there will become ever-increasing competition over scarce public health resources. How long before those able-bodied on Medicaid argue that their access to services should not have to allow for access by a child with Down syndrome, when that child could have been avoided through prenatal testing?

Is it only a matter of time before someone writes that parents who choose to forego prenatal testing and give birth to a child with Down syndrome “should bear the full responsibility for the harm they knew or ought to have known could happen?”

For those interested in the debate about vaccinations and liability, I recommend reading Caplan’s piece in full and the comments, which are of interest as well. Further, this has been the subject of legal journals, with this article explaining why liability should not be imposed and this article suggesting a modified version of the argument may allow for parents being liable if they choose not to vaccinate their children.