Persistent challenges: bigotry and ethical prenatal testing

A visit to National Park sites, a presentation to medical professionals in Kansas City, a violent protest in Charlottesville, and a news report out of Iceland all came together in less than a week as a reminder of the persistent challenge of our bigotry against our fellow human beings. 

Our Story: Four NPS sites in Five days

Regular readers know of my regular trips with my kids Juliet (13) and James (11) to National Park Service sites. When Amy Allison, the Executive Director for the Down Syndrome Guild of Kansas City, invited me to be part of a group presentation to medical professional on prenatal testing for Down syndrome, I quickly mapped out what sites we could visit en route. Each of them had something related to America’s original sin of slavery and racism.

Most associate the Jefferson Expansion National Memorial not by that name, but rather the more succinct name of the St. Louis Arch. But, the Memorial predated the construction of the symbolic Gateway to the West by decades. As part of the Memorial is the Old Courthouse, built in the early 1800’s. It was there that Dred Scott and his wife Harriet sued for their freedom. You can read the words of the two court decisions in the collage above and quoted below. From an earlier Missouri Supreme Court Decision:

“[Slaves] are in truth a species of property sui generis, to be held, disposed of, and regulated according to the laws of each particular state where slavery exists. In all slaveholding states color raises the presumption of slavery, and until the contrary is shown, a man or woman of color is deemed to be a slave.”

And, from Chief Justice Taney’s 7-2 majority opinion for the United States Supreme Court:

Americans of African ancestry were not eligible to be citizens, based on the historical claim that they “had no rights which the white man was bound to respect.”

South of the Arch is the Ulysses S. Grant National Historic Site. The site preserves White Haven, the home of Grant’s wife’s family. Despite the name, the home had traditionally been painted “Paris Green” (named for a shade of paint created by adding arsenic).  But, the name was fitting in another sense: Grant’s father-in-law was a slave owner, having between 20 and 30 slaves work his plantation. Grant would live at White Haven before relocating to Galena, Illinois and then re-entering the army, rising to be the General of all Union Armies, and leading the Union to victory over the South.

Heading west, in Independence Missouri is Harry S. Truman National Historic Site. It preserves the home he and his wife, Bess, lived in their entire married life, with the home being Bess’s family’s home. (Side note: interesting how these two future presidents both married and then lived in their in-laws’s homes). Rising to the presidency upon the death of Franklin Roosevelt, as Commander-in-Chief, it was Truman that desegregated the armed forces.

Our westernmost stop was in Topeka, Kansas, where we visited the Brown v. Board of Education National Historic Site. Years after Truman ordered the integration of the armed services, schools remained segregated in much of the states, having the legal authority to do so under a separate Supreme Court decision, Plessy v. Ferguson, which permitted “separate but equal.” Under that false rubric, so long as the schools appeared of the same quality (or in many cases even if they did not), segregated schooling was allowed. That was until a group of parents in Topeka, and from other states, brought lawsuits to desegregate the schools, arguing that “separate but equal” was not attainable and instead reinforced negative stereotypes of African Americans. This time, the Supreme Court agreed, with Thurgood Marshall arguing on behalf of the NAACP (Marshall would go on to become the first African American Supreme Court justice).

Charlottesville Lee Statue Protest

Near the end of our trip, the awfulness happened in Charlottesville, Virginia. The town had planned to relocate a statue of Robert E. Lee, the Confederate General, Grant’s opposite in the Civil War, from a prominent location in downtown Charlottesville. Seizing on an opportunity, the KKK and white supremacists vocally planned a protest rally. Counterprotesters arrived as well and violence broke out. A rage-filled young man would plow his car into the counterprotesters, killing one and injuring many others. The President would be criticized for initially condemning hatred “on both sides.”

The persistent challenge of race

The Dred Scott case began in the 1840’s in an effort by the Scotts to be recognized as free people. The Civil War ended in 1865 with Constitutional Amendments soon thereafter being passed requiring equal protection under law. The armed services would remain segregated for almost 90 years after slavery was abolished. School children would continue to be segregated, requiring federal troops to enforce court orders of integration over 100 years after the Civil War. And, in 2017, racists would march openly for the proposition that a person was better than another based on the color of their skin.

Wars have been fought. People have died. Incredibly able attorneys have argued and lost in decisions written in the most callous way about a fellow human being, and then won in other cases. And it goes on. It is a persistent challenge to convince each generation that they are no better or worse based on their race or ethnicity. We must continually work to reaffirm the ideal expressed in the American Creed that we are all created equal.

The persistent challenge of ethically administering prenatal genetic testing

While racism is a persistent challenge, it is encouraging, through the progress of our society and country, that groups like the KKK are roundly viewed by all reasonable people as evil and an organization to be denounced. On the issue of discrimination against those with disabilities, it is less cut-and-dry of an opinion shared by most people. And, it is due to the nuances of the issue. But those nuances do not mean progress cannot and should not be made.

The impetus for our travels was a presentation in Kansas City to medical professionals about best practices in administering prenatal testing for Down syndrome. Dr. Brian Skotko covered the science behind cell free DNA screening, what research has shown is the impact of prenatal testing and selective termination, and how families and individuals with Down syndrome overwhelmingly characterize their lives as valuable and loved. My colleague Stephanie Meredith presented on the materials developed to support expectant moms and their partners when receiving unexpected news. And, I presented on the relevant laws and bioethical justifications and issues surrounding prenatal genetic testing. Hopefully through this presentation more providers and parents will be appropriately counseled and provided the needed supporting resources when receiving a prenatal test result.

In the same week as our trip and the news out of Charlottesville, CBS News reported on how Iceland is quickly approaching “eliminating Down syndrome.” (You can watch the 10 minute video at this link). Now, of course, Iceland has not actually eliminated the condition that is Down syndrome. It is a condition that happens at or soon after conception. Iceland has not figured out a way to stop it from occurring.

Iceland has just figured out a way to stop those conceived with Down syndrome from being born.

The news report is that almost 100% of all pregnancies diagnosed with Down syndrome are aborted. This means Iceland has a near 100% termination rate. The report features a mom whose daughter was one of only three in the entire nation to be born with Down syndrome in 2009.

It goes on to report how the government requires every pregnant woman be informed of the opportunity to be prenatally tested for Down syndrome. One of the medical providers who counsels expectant moms admits that she thinks the mere offer may point a mom in the direction of having the test, but she starts by saying they try to stay neutral in their counseling. Another counselor, one who counsels women prior to terminating, states that while there are cute children with Down syndrome, there are others more affected and that those who terminate are doing so to prevent the child and the family from suffering from Down syndrome.

A medical geneticist interviewed said he sees the 100% termination as indicating “heavy-handed genetic counseling.” A young woman with Down syndrome says that the challenge is that most “just see Down syndrome. They don’t see me. … I am just like everyone else.” Her mother, when asked if she could have envisioned her daughter as she is now, living on her own with her boyfriend, when her daughter was born answers, “I didn’t have the imagination then.”

I know by linking these two topics that distinctions can be drawn. But, I link the two topics of race and Down syndrome to show the similarities.

For centuries, the law recognized exactly what the Missouri and United States Supreme Courts said: that blacks were property not entitled to the same rights as whites. Even after a war was fought and slavery abolished, many that made up a majority of where they lived still held those views and created separate and unequal societies for blacks versus whites. And, still to this day there are some who do not have the imagination to see someone who is black as equal to themselves who are white.

Similarly, Down syndrome, for centuries, has been perceived as an evolutionary regression, as burdens to the state to be eliminated, as “mere blobs.” Those with Down syndrome were segregated and warehoused in institutions. Still to this day, parents have to fight so that their child is not segregated in a separate classroom when the federal mandate of “least restrictive environment” should integrate the child in the main classroom with their peers.

There are medical providers, charged by guidelines or, in the case of Iceland (and in California and Iowa) governmental policies, to advise patients they can prenatally test for Down syndrome and terminate if the test is positive, and that doing so they will be preventing suffering. They lack the imagination to see what a life with Down syndrome can be like and that that life was created just as equal to their own.

And, so, Down syndrome is being eliminated. Will the same progress made with racial equality also happen with accepting those with Down syndrome before it is too late? Perhaps, but history and current events suggests it may take a century or more.

*  The Down Syndrome Guild of Kansas City had their video Just Like You translated into Icelandic as one measure to raise awareness about what a life with Down syndrome can be like. More efforts like these are needed.