In a recently published article titled “Chloe’s Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing,”[i] Arthur L. Caplan, Director of the Division of Medical Ethics at New York University’s Langone Medical Center warns that emerging Down syndrome prenatal education laws are ending “value-neutral counseling,” and “setting the stage for further normative shifts in clinical reproductive genetics.”

Dr. Caplan has misrepresented the intent of Chloe's Law, Pennsylvania’s Down syndrome prenatal education law, and other similar state and federal legislation that is intended to ensure women and their partners are fully consented following a positive prenatal diagnosis of Down syndrome.

In his article, Caplan quotes from “Chloe’s Law” when he writes that, the Pennsylvania Department of Health is required to provide "up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations." But he somehow interprets “up-to-date, evidenced-based information” as being biased. In fact, if information truly up-to-date and evidenced based, it must disclose the full range of possible outcomes, including potential co-existing medical conditions, cognitive challenges, etc. and not hide the positive information that is also available on living with Down syndrome. It would seem that Dr. Caplan equates positive information with bias.

The most widely promoted resource to fulfill the requirement of these laws has been endorsed by all the related professional associations like the National Society of Genetic Counselors and others. “Understanding a Down Syndrome Diagnosis”, available at Lettercase.org, lays out the full range of potential medical, social, and cognitive issues parents may face, and includes both abortion and adoption as choices some make. Louisiana and Indiana are the only states that so far have opted to exclude information on abortion in their laws, and they have received criticism from the very advocates that have promoted these pro-information laws in other states for doing so.[ii]Louisiana's law has passed and Indiana's has not.

State level Down syndrome prenatal education laws are modeled after the 2008 federal Prenatally and Postnatally Diagnosed Conditions Awareness Act that was introduced by senators Sam Brownback and Ted Kennedy. The Kennedy-Brownback law was signed by President Bush, but never funded supposedly due to haggling between pro-life and pro-choice groups over the information these laws would provide. Massachusetts was the first state to move past the federal deadlock and pass a state Down syndrome education law in 2012. In 2014, five states passed similar laws, and a few more in 2015 including Ohio, Texas, and Illinois.

Down syndrome prenatal education laws are intended to remedy a long-standing bias patients have reported from experiences they have had with their medical provider after a diagnosis of Down syndrome. That remedy includes information that 1.) Parents who have children with DS report that they are happy; 2.) Siblings report that they are happy and not ashamed of their brother or sister with DS, and; 3.) Those living with DS themselves are happy with their lives (see B. Skotko's series of articles in the American Journal of Medical Genetics, Part A, 2011).[iii]It also includes information on positive health outcomes after surgery to repair the cardiac defects that affect almost half of Down syndrome births, educational and social opportunities, an ever-increasing life expectancy, and positive developments in medical research.

What patients report from their experiences with prenatal counseling causes one to question how "values neutral" the medical community has been when presenting the results of a prenatal diagnosis of Down syndrome. In a 2013 poll published in an article by Brianna Nelson-Goff and colleagues in the Journal of Intellectual and Developmental Disabilities called "Receiving the initial Down syndrome diagnosis: a comparison of prenatal and postnatal parent group experiences,"[iv] 1 in 4 women report that their medical provider was "insistent" they terminate their pregnancy, and their negative experiences with a medical provider outweighed positive ones 2.5 to 1. In working to pass these state laws, Down syndrome advocates are attempting to shift the paradigm from historically outdated and biased information that results in these negative experiences, to information that is comprehensive, factually-based, and reviewed for accuracy by peers in the medical and advocacy communities.

It is a bit surprising that in discussing the number of abortions in the U.S. following prenatal diagnosis, Dr. Caplan chose to rely on outdated data from 2009 research claiming that the termination rate in the U.S. mirrors that of the UK at around 92%. In 2011, Jaime Natoli and colleagues published a new study in Prenatal Diagnosis that reported the mean termination rate following prenatal diagnosis in the U.S. is 67%. [v] Gert de Graaf, Frank Buckley and Brian Skotko confirmed Natoli’s findings in a recently published statistical study in the American Journal of Medical Genetics.[vi] Using a statistical model to evaluate the data they gathered, they claim that the Down syndrome population has been reduced by about 30% in the U.S. because of the availability of prenatal diagnosis and abortion. Extracting the numbers from their study, their identification of the termination rate in the U.S. is very close to what Natoli et al published in 2011. A 67% termination rate is tragic enough, but if the statistic cited by Dr. Caplan were accurate, it would be even stronger evidence that something is drastically wrong in the way prenatal diagnosis is being managed in the U.S.. Only slightly less than 1 in 10 parents would be choosing to have their child.

Lastly, one might ask if neutrality in genetic counseling is really even possible, if it is truly just, or even if it is reflective of legislation currently in place to protect persons with disabilities. Given the lived experiences of families who have children with Down syndrome reported in Dr. Skotko’s research, it would seem that compassionate counselors and the professional associations that represent them would want to encourage families who receive a positive prenatal diagnosis with positive and balaned news - maybe even going so far as to invite them to consider avoiding the pain of choosing to abort an otherwise wanted child based only upon the shallow results of a prenatal test that can tell them nothing of who their child will grow to be? We live in a society where the choice to have, or not have a child with Down syndrome can be freely made. Most families, however, report that when they have experience with other families and their children with DS, their choice changed. They realized that those families and children are really not that much different than anyone else.[vii]

The selective termination of a child because they have a disability is a different decision than the decision to abort when contraception fails. It is an act of discrimination because it is a targeted decision made against an individual that is usually based upon ill-informed assumptions and the provision of outdated and biased information by medical providers. A prenatal test cannot possibly provide knowledge of who a particular child will be, the extent of their disability, or how his or her life will impact the life of the family. Parents need to know that.

July 26, 2015 marked the 25^th anniversary of the Americans with Disabilities Act. It is a good time to ask the question, if the decision to terminate a pregnancy prenatally diagnosed with DS or another disability qualifies as a form of discrimination, that is in conflict with the findings and philosophical underpinnings of the ADA and other legal protections that have been put into place in the U.S. to shield those with disabilities from discrimination (See, "Reflections on the American's With Disabilities Act 25 Years Later").

Down syndrome prenatal education laws are a way to ensure that women and their partners who receive a confirmed prenatal diagnosis of Down syndrome are informed with the full range of possible outcomes so that they can make their decision based upon good information - maybe even after some time spent with another family living with Down syndrome.

Dr. Caplan claims, “disability and pro-life groups will want information that puts disability in a positive light and abortion in a negative light.” Perhaps in this statement, Caplan is revealing his own bias. Isn’t it a good thing that there are advocates willing to work with state legislatures to pass laws that ensure families are protected from the influence of those who have an outdated and negative view of disability.