As of 2019, nineteen states have laws that require the provision of accurate written information and referral to local parent support organizations when a health care provider delivers a pre- or post-natal test result for Down syndrome. With this many state laws, this requirement is a developing legal norm.
The List of Laws
The National Center for Prenatal & Postnatal Resources has cataloged the states that have laws requiring accurate information be provided with a Down syndrome test result. I refer to these laws as Down Syndrome Information Acts or “DSIAs”. At its website, the National Center helpfully adds states as their DSIAs become enacted, so the list also provides the chronology of the order the states enacted their DSIAs. Plus, where the state provides a fact sheet to be provided with the test result, the National Center has provided a link to those in its list as well.
Summary of the Laws
The states with DSIAs have common elements to their laws:
- The laws cover both pre- and post-natal test results;
- Who is to provide the information is broadly defined to encompass all levels of health care providers involved in pre- and post-natal care;
- A state agency, typically the Department for Public Health (I believe all so far), provides a fact sheet about Down syndrome that includes not just health characteristics, but information about families, education, and social supports; and,
- A referral to a local parent support organization is included in the information to be provided.
The main distinction among the various versions of the law is whether the provision of the information is mandatory (as it is with the majority of the laws) or leaves it to the health care provider’s discretion.
A developing legal norm
A legal norm is a rule of law that becomes just that, a rule of law, due to a sufficient number of sovereign entities adopting the same or similar rules. In the legal world where I practice, I first learned of this idea in my law school class on international law. Because there is not one central governing international authority, certain international disputes are adjudicated based on how most, or many, nations had legislated on the issue. Rather than legal norms being justified because “well, everyone else is doing it that way,” it is more the case of reflecting the wisdom of crowds: enough people in separate governing bodies have considered an issue and each decided independently the issue should be handled in a common fashion.
Nineteen independently sovereign state legislatures have considered the issue of how pre- and post-natal Down syndrome test results should be delivered. All of them came to the common recommendation/requirement that in addition to just the test result, parents should receive accurate written information about Down syndrome and referral to parent support organizations. In those nineteen states, it is a matter of law, but as each subsequent state passes a version of the Down Syndrome Information Act, it becomes a custom that should be followed even where a law has not been passed.
The effect of this momentum is a bit ironic given the impetus for DSIAs. Local parent organizations were motivated to have laws passed because medical professionals were not following their own professional guidelines.
Guidelines have recommended accurate information and recognized the value of referral to local support organizations since 2007. Since 2011, the National Society of Genetic Counselors has had a list of approved written resources. And, with the advent of cfDNA screening, the NSGC, American College of Obstetricians & Gynecologists (ACOG), and the American College of Medical Genetics (ACMG) each recommended common resources with the delivery of those test results. One of those common resources is the National Center’s book: Understanding a Down syndrome diagnosis.
Yet, practitioners continually provide just the test result and not the recommended written information or referral to local parent support organization.
To address this non-compliance, parent advocates lobbied their elected officials to make it a legal requirement to provide the balancing information that has been recommended for over a decade. Now, as more states enact DSIAs, the reverse should happen: even where a state does not have its own DSIA, the medical providers should provide the recommended information, not only because their medical guidelines recommend it, but because doing so has become a legal norm.
I have seen this happen with another issue that is a motivating factor for how medical providers offer prenatal testing: wrongful birth lawsuits.
The very first ACOG Liability Alert was prompted by a patient suing her physician for not offering her AFP testing and she had a child born with Down syndrome. She complained that had her doctor offered her the AFP test, she would have aborted her child and now the physician and hospital had to pay what she claimed were the additional costs of raising a child with Down syndrome.
These illogical and repugnant legal claims called “wrongful birth” became recognized in just over half of all states. Conversely, in just under half of the states, by court rulings or affirmative legislation, they do not recognize the claim of wrongful birth. But, still, health care professionals who practice in those states that do not recognize wrongful birth claims have told me they offer prenatal testing “or else I’ll be sued.” Thus demonstrating the normative effect of wrongful birth claims.
Hopefully, the DSIA’s will provide a positive counterweight as a legal norm. Practitioners should abide by their medical guidelines, but if they did, then DSIAs would not be necessary. As more states pass DSIAs, hopefully it will have the legal normative effect that practitioners in all states will offer accurate written information and referral to parent support organizations because it is the right and legal thing to do.
I have advised advocates on the passage of most of the DSIAs that have been enacted. If your organization is interested in passing a DSIA in your state, please contact me via Facebook messenger or markwleach321@gmail.com.
Recent Comments