Comments from David Perry on this post can be found here.
Pro-Life, Pro-Choice, Pro-Information: Proceed with Caution
by Nancy McCrea Iannone.
The Louisiana Legislature recently passed a law requiring health care providers to provide information to expectant parents receiving a Down syndrome diagnosis. While the law follows the positive and rising "pro-information" trend among the states, the Louisiana statute deviates from this trend significantly. Louisiana added a requirement that the information the Department of Health and Hospitals gives to health care providers, and which the providers are required to give out to patients, "cannot explicitly or implicitly present termination as a neutral or acceptable choice."
"Pro-information" is the word that many members of the Down syndrome community have used to describe the movement in support of expectant parents receiving accurate, balanced, and up-to-date information about Down syndrome after a prenatal diagnosis. The pro-information movement includes both pro-life and pro-choice members, united in the common mission of supporting and informing expectant parents.
Louisiana has taken an efficient, unifying model pro-information law and has tinkered with it, creating a situation which is more complicated for health care providers and potentially much worse for parents receiving a prenatal diagnosis of Down syndrome. In the history of the pro-information movement, Louisiana's actions stand out as a major and harmful setback. Recent history provides the context for Louisiana's legislation as well as solutions for the problems this legislation creates.
Federal Law weakened and unfunded
In 2007, two senators from opposite ends of the political spectrum introduced the "Kennedy Brownback bill," a pro-information bill. It required health care providers to provide up-to-date detailed information to parents receiving a prenatal Down syndrome diagnosis. Sometime after it unanimously passed the Health Committee, the language was altered. The requirement placed on health care providers was deleted, and in its place appeared a much softer directive to the Secretary of Health to provide funds to a "grantee" who would, among other things, provide patient resources to health care providers. Written in this way, the Prenatally and Postnatally Diagnosed Conditions Awareness Act passed. Its passage excited advocates for people with disabilities, but as the bill was weakened and never funded, it had no impact on a federal level.
States pick up the mantle
Louisiana overshoots its mark; efforts set to backfire
Louisiana's exclusion of termination in its state-mandated Down syndrome materials flies in the face of national, historic efforts to provide a unified approach to prenatal information and it threatens to harm the cause of providing accurate, up-to-date information to pregnant women and their health care providers. Beyond destroying the original unity between left and right, beyond ignoring the hard-fought consensus among representatives of medical and Down syndrome groups, Louisiana's legislation creates a very difficult situation for providers and patients alike. While providers in Louisiana are now bound by statute to distribute termination-free information, they are equally bound by law and professional ethics to inform patients about the option of termination. Louisiana is one of the many states in the country which recognizes wrongful birth/ life claims, which leaves providers who fail to provide diagnosis and termination information subject to liability. Such lawsuits use standard of care as a guide. Providers look to professional organizations such as the American Congress of Obstetricians and Gynecologists and the National Society of Genetic Counselors for such standards. These organizations include termination as information which must be provided to patients after diagnosis.
Thus in order to meet all of their legal obligations, Louisiana health care providers must give out the termination-free materials provided by the state, and also separate termination-present information. What form will the latter take? Will it present the option of termination delicately and neutrally as the Kennedy Foundation's booklet does? Or will providers look for strongly-worded pro-termination information to balance the perceived pro-life information provided by the state? Or will providers talk of termination with whatever bias they already have, be it a pro-life, neutral, or pro-termination stance?
In Louisiana and in other parts of the country, the short-sighted efforts of some advocates are set to backfire. They are desperately working to purge prenatal information of all mention of termination, even in neutral form which provides evidence-based information about the possible emotional impact of termination after diagnosis. In doing so, they seek to give up that neutral presentation of termination in favor of a presentation which will vary wildly among health care professionals depending on their biases. This is an enormous set-back to the "pro-information" cause, brings the credibility of Down syndrome information into question due to the perception of a "pro-life" slant, and leaves the field wide open for an unpredictable variety of termination materials given to expectant parents.
Salvaging the "pro-information" cause
In the meantime, various states across the country continue to consider and pass legislation which hold true to the original mission of a unified approach to prenatal information. You can keep track of these efforts here on Mark Leach's blog DownSyndromePrenatalTesting.com.
The Louisiana legislation will prove logistically problematic for health care providers in that state who wish to provide accurate, balanced, neutral information while meeting their legal and ethical obligations. More worrisome is the potential impact on the rest of the states if Louisiana's actions cause a ripple effect. The pro-information movement has been able to keep itself relatively free from partisan divisions because of the priority of providing accurate, medically approved materials to expectant parents. If there are more versions of "pro-information" legislation which exclude even neutral mention of termination, the movement may be destined to disintegrate into the typical red state/ blue state divisions. Advocates can prevent this by being aware of the potential implications of tinkering with the model language, and advising their lawmakers to keep focused on the goal of providing accurate, balanced information to expectant parents.
Nancy McCrea Iannone has been providing active support to expectant parents on Baby Center’s Down Syndrome Pregnancy discussion board since 2006. The story of her daughter’s birth is contained in Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (“A Hopeful Future”) and Gifts II: How People with Down Syndrome Enrich the World (“An Enlightening Snow Day”). Nancy is the co-author of the book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome and the booklet “Your Loved One is Having a Baby with Down Syndrome.” Both of these publications and additional resources can be found at DownSyndromePregnancy.org, part of the National Center for Prenatal and Postnatal Down Syndrome Resources.
Amy Julia Becker provided editorial assistance for this post.