If abortion is generally legal, should it also be legal when it comes to ending the pregnancies of mothers whose fetuses have Down syndrome? This question – recently forced into the public debate by new restrictions in conservative-led states – is a flashpoint among supporters of abortion rights.
The debate doesn’t cut cleanly across traditional lines in the abortion fight. While some who favor abortion rights feel women should be able to terminate their pregnancies for any reason, others worry that certain populations are being discriminated against or even at risk of being wiped out.
Bioethicist Chris Kaposy, whose son has Down syndrome, tackles the hugely controversial issue in his new book “Choosing Down Syndrome.” Kaposy, a professor at Memorial University in Newfoundland, Canada, says that parents shouldn’t choose abortions because of Down syndrome because science shows families with such children typically function well.
Kaposy supports abortion rights and doesn’t want to restrict them or even limit prenatal genetic testing. He actually thinks moves by state legislators to ban Down syndrome-selective abortions — as Utah, Ohio, North Dakota, Louisiana and Indiana have done and Pennsylvania is moving toward — are misguided. He argues a cultural shift is necessary instead so that the procedure won't be considered when a fetus tests positive for Trisomy 21 — the chromosomal defect that leads to the condition.
Here’s the crux of Kaposy’s argument: Families and society at large are losing out on valuable and enriching experiences by rejecting babies with the genetic condition — and are even contributing to the social bias against people with cognitive disabilities.
“If you really are committed to reducing bias, one thing you can do is choose to parent a child with Down syndrome if given that option,” Kaposy told me in a recent interview. “That would benefit people in the Down syndrome community in various ways.”
The counter argument is this, according to a story by my colleague Ariana Eunjung Cha: That antiabortion forces are using the Down syndrome issue to push for abortion restrictions; that they don't talk about increasing money for social services to support the population and that such measures undermine privacy rights outlined in the 14th amendment to the Constitution.
And measures designed to stop such selective abortions have run up against legal trouble: A federal judge in mid-March blocked Ohio’s law preventing abortions of fetuses with Down syndrome and on Friday, a federal appeals court ruled Indiana’s law restricting abortions is unconstitutional.
In both cases, the judges said Indiana and Ohio unduly restricted the right of women to obtain an abortion before the point of viability, the term used for when a fetus could survive outside the womb. The challenges were brought by the American Civil Liberties Union and Planned Parenthood, which argue the purpose of these laws isn't to protect people with Down syndrome but rather to further restrict abortion rights.
“Many parents find that having a child with Down syndrome is the right decision for them, but this does not mean that their experience should lead to a law that forces other families into the same situation,” Karrie Galloway, president of the Planned Parenthood Association of Utah, has said.
But supporters of these restrictions note that many parents in the United States — and in other developed countries — feel that having a child with Down syndrome is instead the wrong decision for them.
The rates of abortions for fetuses with Down syndrome are reportedly extremely high in the developing world — meaning those living with the condition find themselves in increasingly smaller communities, and there could be less incentive for lawmakers and policymakers to fund research on it.
That situation is precisely what worries Kaposy. The author does feel there are some situations where a family might be justified in ending a pregnancy if the fetus is diagnosed with Down syndrome. But he says most people aren’t aware of the body of evidence showing welcoming such a child often proves rewarding and personally enriching.
Kaposy points to empirical evidence that children with Down syndrome enhance the lives of those around them. Recent studies have found that these children don’t place additional strain on the marriages of their parents, and their siblings typically feel affectionate toward and even proud of them. In a 2011 study by researchers at Boston Children’s Hospital, 99 percent of people with Down syndrome reported they’re happy with their lives.
“There’s lots of evidence showing people with Down syndrome live good lives, report high levels of well being,” Kaposy told me. “There’s lots of evidence families function very well when they include a child with Down syndrome.”
Kaposy first became interested in the topic upon learning of the “Baby Doe” case in the 1980s, in which the parents of a baby with Down syndrome declined surgery to fix an esophageal atresia, which led to his death. The baby’s doctor had argued the parents declined the surgery because he was intellectually disabled, not because the procedure was risky.
A few years later, Kaposy and his wife gave birth to a son, Aaron, who has Down syndrome. For his son and others with the condition, he hopes for more inclusion in the workforce and better social acceptance. “There’s an epidemic of loneliness among people with cognitive disabilities,” Kaposy told me.
The two main Down syndrome advocate groups in the United States have raised similar concerns, although neither take official positions on the state legislation.
Sara Hart Weir, president of the National Down Syndrome Society, recently expressed concern to Ariana that women aren’t receiving “accurate, up-to-date information about Down syndrome from their health-care providers.” Global Down Syndrome Foundation President Michelle Sie Whitten called Down syndrome-motivated abortions “is a profound issue that needs discussion.”
Indeed, there’s a spirited discussion around the issue.
The Post’s Ruth Marcus recently published two columns explaining why she would have aborted a fetus with Down syndrome. The pieces prompted pushback from No. 4 House Republican Cathy McMorris Rodgers, who has a son with the condition:
After reading the opinion piece in the @washingtonpost about aborting babies with Down syndrome, I struggled to put into words how offensive it is. Thread...— CathyMcMorrisRodgers (@cathymcmorris) March 12, 2018
When our son, Cole, was diagnosed with Down syndrome, my husband and I were given a long list of challenges and complications from his doctors. But when we looked at Cole, we still saw lots of potential.— CathyMcMorrisRodgers (@cathymcmorris) March 12, 2018
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— The Health 202 sends condolences to the family and friends of Brett Norman, a long-time reporter on Politico Pro's health team and a former deskmate of mine. Brett, 43, passed away from pancreatic cancer on Saturday, leaving behind his wife, journalist Kate Dailey, and two young sons. "Kate had one request of us – that we 'tell everyone he was the greatest guy,'" Politico editors wrote in an email to staff over the weekend. Brett initially covered bioethics for the Pro team and more recently, handled the pharma beat. We -- and the health policy world -- will sorely miss him.
AHH: Ohio, where drug overdose deaths are the second-highest in the nation, is taking the fight against the opioid epidemic into the classroom with a new style of drug-abuse-prevention education, Sarah Vander Schaaff writes for The Post. Teachers now are encouraged starting in kindergarten to discuss real-life situations involving drug use and ways to deal with them and to build social and emotional skills to reduce the risk of substance abuse.
Until recently, kindergarten safety efforts typically focused on stranger danger and on avoiding household hazards. But three years ago, a first-grader brought a heroin needle to school in her backpack and explained how her father used the needle and said that she brought it to school to keep a younger sibling from stepping on it . That prompted teachers to began a pilot of the Health and Opioid Prevention Education, or HOPE, program, developed by a team of educators with a grant from the Ohio Department of Higher Education.
OOF: Conservative media star Laura Ingraham is being sued by her former personal assistant for pregnancy discrimination, our colleague Keith L. Alexander reports. Karolina Wilson, who worked for nearly 16 months as a personal assistant for Ingraham, alleges the Fox News host became hostile toward her once she became pregnant and then fired her on her first day back from maternity leave. Ingraham, through her attorney, has denied the allegations.
“Ingraham allowed Wilson to remain with the company for about three weeks so Wilson could eventually collect unemployment insurance,” Keith writes. “During that time, Wilson alleges, the company refused to set up a private space for her to pump breast milk at the office in Northwest Washington, and she had to go to her car in a nearby garage.”
Wilson said her job kept her in constant contact with Ingraham via phone or email, sometimes seven days a week and sometimes late into the night or early morning. She said before her pregnancy that “things were going very well.” “Laura is a very demanding person who is not easily satisfied, but I always satisfied her and she was always happy with my work,” Wilson told Keith. “She never complained to me about anything. I was tired. It was a lot, but I loved that kind of work. That’s why I do it.”
OUCH: The White House and top senators are growing increasingly concerned there may not be enough votes to confirm doctor Ronny Jackson as Trump's VA secretary, Axios's Jonathan Swan reports. Jackson is well liked in his role as the White House physician, but some senior officials question whether he has the management experience necessary to run the second largest agency in the federal government and senators from both parties share that skepticism, Jonathan writes.
"Sources with direct knowledge of the private deliberations on Capitol Hill and inside the White House tell me the White House is well aware of these widespread concerns about Jackson," Jonathan writes. "In fact, Trump's chief of staff John Kelly thought it was unwise for Trump to nominate Jackson so quickly without going through all the due diligence that a normal cabinet nomination process would involve. Though since then, I'm told Kelly has aggressively defended Jackson."
Administration officials are intensely prepping Jackson for his confirmation hearing on Wednesday. "They're doing murder board sessions this weekend in the Eisenhower Executive Office Building beside the White House, and sources briefed on these sessions tell me they have been going on pretty aggressively for the last couple of weeks," Jonathan writes.
— Health and Human Services Secretary Alex Azar is recovering at home in Indianapolis after his second hospitalization to be treated for diverticulitis, a painful bowel condition in which there's an inflammation or infection of small pouches that bulge outward through the colon (ouch).
HHS spokeswoman Caitlin Oakley said Friday Azar’s doctors have advised him to rest and it’s unlikely he’ll be back at work in Washington until sometime this week. "He remains engaged with the responsibilities of running the department," Oakley said in a statement. Maybe Azar will also have time to catch up on any Health 202 editions he might have missed.
— Republicans are increasingly joining their Democratic colleagues to embrace looser rules on marijuana. The issue could become key in helping turn out millennial voters come the midterms in November, our colleagues Sean Sullivan and Seung Min Kim report.
Senate Minority Leader Chuck Schumer (D-N.Y.) announced his support for decriminalizing pot at the federal level on Friday, saying his thinking had “evolved.” A week earlier, Sen. Cory Gardner (R-Colo.) had announced an agreement with Trump that his state’s legal pot laws would be protected from federal interference. (The Health 202 wrote this month about that agreement). And former House speaker John Boehner recently joined the board of advisers for a company that cultivates and dispenses cannabis.
“The developments mirror a change in public opinion as well as an uptick in the number of states that have legalized some form of marijuana use,” Sean and Seung Min write. “As they gear up for the fall campaign, both parties are trying to energize their bases to turn out at the polls. For Democrats, who have embraced the most liberal platform in decades, marijuana reform is another issue they hope will enliven their core voters.”
“This motivates young people because it’s a question of freedom, of justice,” said Sen. Brian Schatz of Hawaii, part of a younger, more liberal generation of Democratic lawmakers.
— House Majority Whip Steve Scalise (R-La.) was released from MedStar Washington Hospital on Saturday after undergoing a follow up surgery related to the gunshot wound he suffered at a Congressional baseball practice last summer. The planned surgery “was successful" and Scalise will be "recovering at home for the next several days," the hospital said in a statement, our colleague Dave Weigel reports.
The procedure was one of several rounds of surgery Scalise has undergone since he was shot in the hip at the June 14 attack on Republican lawmakers. Doctors said he was on the brink of death when he initially arrived at the hospital. The surgery kept him away from Congress during last week’s three-day House session.
— A few more good reads from The Post and beyond:
- The National Council for Behavioral Health NATCON18 continues
- The National Center for Complementary and Integrative Health holds an event “Reframing the Primary Care Management of Chronic Pain.”
- AdvaMed, the Medical Device Manufacturers Association and the Medical Imaging Technology Alliance along with The House MedTech Caucus hold a Capitol Hill briefing on "Significant Federal Policy Issues for the Medical Technology Industry.”
- The USDA holds a webinar on opioid misuse.
- The Senate Health, Education, Labor and Pensions Committee holds a hearing on various bills on Tuesday.
- The House Ways and Means Subcommittee on Health holds a hearing on health care innovation on Thursday.
- The House Ways and Means Subcommittee on Trade holds a hearing on the opioid crisis on Wednesday.
- The Centers for Medicare & Medicaid Services Office of Minority Health and Substance Abuse and Mental Health Administration’s Office of Behavioral Health Equity host a forum on the opioid crisis on Wednesday.
- Roll Call hosts an event on patient-focused health on Wednesday.
- HHS Secretary Alex Azar speaks at the 2018 Health Datapalooza, which will be held on Thursday and Friday.
Barbara Bush's granddaughters read from proverbs at her funeral: