By / Feb 9

Jason Thacker talks about ethics of prenatal testing and bioethics on World’s “The World and Everything In It” podcast.

Full interview here.

By / Jun 8

“At around twelve weeks, we’ll do a blood test to screen for any chromosomal abnormalities, and you’ll be able to find out the sex if you choose to do so.” This is now a routine statement, a version of which can be heard around the world in consultations between pregnant women and their obstetric care providers. When a woman goes to the clinic for an early pregnancy check-up, she will most likely be offered noninvasive prenatal testing (NIPT), sometimes called cell-free DNA (cfDNA) screening. 

For many women, the opportunity to find out the sex of their preborn child earlier than the ultrasound anatomy scan is reason enough to have the screening. But what exactly does NIPT screen for? And why are some ethicists concerned about it?

What does NIPT do? 

Noninvasive prenatal testing (NIPT) analyzes DNA in a pregnant woman’s blood to screen for chromosomal disorders caused by the presence of an extra or missing copy of a chromosome. NIPT primarily looks for Down syndrome (trisomy 21), trisomy 18, trisomy 13, and extra or missing copies of the X and Y chromosomes. The testing is considered noninvasive because the blood is drawn only from the pregnant woman, unlike diagnostic testing such as amniocentesis, which involves inserting a needle into the womb to collect a sample of amniotic fluid, a procedure which carries a risk of miscarriage. 

NIPT can give both false positives and false negatives, and one study revealed a 10% rate of false positivity. Because it is a screening test, any positive result requires invasive diagnostic testing like amniocentesis to confirm the result. 

While NIPT is a relatively new testing method, it is being used at rapidly increasing rates. While it was previously covered only for those of advanced maternal age, more insurance companies are now covering it for all women. But there are some concerns.

Ethical concerns 

The ethical problems that arise from this kind of screening are extensive. Some ethicists are concerned that the growing prevalence of NIPT will lead to an increase in abortions following a screening that reveals an increased risk for Down syndrome or other chromosomal abnormalities. A study published in 2020 found that the growth of prenatal screening in Europe has reduced the number of babies being born per year with Down syndrome by an average of 54%, and that study was conducted before many European countries offered NIPT. The screening and abortion rates in Iceland have led to only one or two babies with Down syndrome being born each year on average (the population of Iceland is 330,000).  

A reduction in the number of people born with these conditions could directly affect the care and research available for those who are living with such conditions, as well as the possibility for increased discrimination. NIPT could also lead to sex-selective abortions, since the sex can be revealed within the first trimester when abortion is more readily available.1Tom Shakespeare et al., “Non-invasive prenatal testing: ethical issues,” Nuffield Council on Bioethics, March 2017, https://www.nuffieldbioethics.org/wp-content/uploads/NIPT-ethical-issues-full-report.pdf.

Some ethicists are also concerned that NIPT will eventually be used to screen for more conditions, including adult onset conditions or carrier status, meaning it could give some indication of issues that might affect the preborn child later in life or be passed on to the child’s future children. And, unfortunately, there is the potential that a mother would be pressured to have an abortion because of a possible condition that could affect the baby decades after he or she is born.

Preparedness or worry 

For many parents, NIPT offers the opportunity to be prepared mentally and emotionally for any chromosomal disorder their baby may have. While the screening cannot give them the certainty of a diagnosis, it can give an indication of probability. For some, this probability is helpful in considering the possible needs of their child and even the possibility that he or she will not live long after birth. Knowing a child has an increased likelihood of a chromosomal disorder allows community to come around and support a mother or couple through the pregnancy.

But for some parents, false positives can lead to increased worry, which could have a negative effect on the pregnancy. When a test result comes back with an increased probability of a chromosomal disorder, the couple is normally referred for genetic counseling. Unfortunately, this counseling can increase worry or come with pressure to abort the child. 

To test or not to test

While researching NIPT, I heard from many women who chose to have the test, but made it clear to their providers that it would not change anything about their pregnancies. For others, given the concerns and the possibility of false positivity, they chose not to have the screening. For them, the potential for increased worry was not worth the risk. 

Dr. Kenneth Singleton, an OB-GYN in Little Rock, Arkansas, shared how he counsels patients who are deciding whether to have NIPT. He advises them that one of the reasons the tests exist is to terminate pregnancies if there is a problem. He goes on:

Counseled correctly, our patients hear the “sanctity of life” bent, and the ones that choose to test are foremost excited about early gender discovery and then are wanting to be mentally prepared if there are other genetic issues that are discovered. I tend to share about my cousin with Down syndrome and also about my granddaughter Sage with trisomy 13. I know patients are getting pushed into testing and then counseled on termination. That is very sad. I have turned that around and use the test as a way to prepare patients mentally, emotionally, and spiritually for the life that God is giving them.

A role we all play

We may not be the ones making decisions about prenatal testing, but as a community of believers, we all have a role to play. As followers of Christ, we recognize the inherent value of every person, even the tiniest preborn baby. At times, prenatal screening will reveal health issues ranging from minor to life-threatening. Whether these issues are revealed early in pregnancy or after birth, we have the opportunity to support families caring for children with a variety of needs. In some cases, our willingness to do so could be the difference for a mother deciding whether to choose life after a difficult diagnosis. 

Receiving this hard news can lead to grief and a drastic change in expectations, even for families committed to life. Practical care like meals, a listening ear, and childcare for other children in the family are simple ways to show we are committed to walking with them on what may be a difficult path. Reaching out via text to ask for specific ways we can pray is a simple but powerful way to show someone they are not forgotten. 

Deciding whether to have DNA screening may be complicated, but deciding to support and care for expectant mothers and families around us is simple. We follow the example of our Savior when we welcome children into our lives, seeing their value and loving them sacrificially.

  • 1
    Tom Shakespeare et al., “Non-invasive prenatal testing: ethical issues,” Nuffield Council on Bioethics, March 2017, https://www.nuffieldbioethics.org/wp-content/uploads/NIPT-ethical-issues-full-report.pdf.
By / Oct 2

Prenatal testing is changing your congregation and the population of individuals with special needs. But before the wave hits you, I want to help you get prepared.

Why should you listen to me? In 2010, backed by McLean Bible Church and its renowned disability ministry, we opened Jill’s House. God has been amazing and, already, no one in the world provides more overnight respite to families raising children with intellectual disabilities than we do.  

But the people who showed up – and those who didn’t show up – surprised us. From our position on the front lines, I want to let you know what your church can expect so that you can do something about it.

Ministries within the church change based on needs and wants. For example, more churches have ESL classes, while fewer have sewing circles. Your church may have closed its bookstore and library but has since opened a ministry for people wrestling with porn and sexual identity. More churches are podcasting and fewer are distributing cassettes.  

When we think of people with special needs, happy children with Down syndrome come to mind. Yet, in our day and age, that’s a misleading picture that will not equip us for effective ministry. Here’s why:  

1. Fewer people with Down syndrome

The majority of families that learn that they’re having a child with Down syndrome no longer bring those kids to term. Tragically, they abort. Prenatal testing has become routine care for expecting mothers. These tests can be done at 10 weeks. When a mom receives a report that her unborn child has Down syndrome, she faces a choice: prepare for a child with a disability or abort.  

A hyperbolic friend recently told me, “The only people who have kids with Down syndrome are Christians and poor people.” Overstated? Sure. On the right track? Sadly, yes. If you are a baby conceived with Down syndrome, there is a high likelihood you will be aborted.

So there are fewer people with intellectual disabilities now? No.

2. More people with autism  

The number of children diagnosed with autism spectrum disorder has increased by 30 percent over the last two years. In March 2014, the Center for Disease Control and Prevention released new data on the prevalence of autism in the United States. The study identified one in 68 children as having autism, a drastic change from the 2012 statistic indicating one in 88 children were affected.

This combination of prenatal testing and the increase in autism diagnoses is quickly changing the disability community in America. A survey of the children we serve at Jill’s House reflects that change. When our ministry opened, we thought we’d mostly have people with Down syndrome and a handful of others. We based our staffing on this. We were mistaken.

Of the children we serve, more than 50 percent have autism, 20 percent have Down syndrome, 20 percent have other diagnoses such as a brain injury or cerebral palsy and 10 percent have other chromosomal abnormalities. Children with autism require more care. Their families come to us much wearier than other families due to the frequent meltdowns and their children’s struggles to communicate.

We’ve learned that parents raising children with autism are 60 percent more stressed than the rest of the population. Their divorce rates are 80 percent higher. Their child’s antisocial behaviors and limited ability to communicate becomes a strain on the whole family. Parents sleep less, sense a loss of control and feel isolated. Marriages crumble and siblings feel neglected. These families need our support.

Ministering to families affected by autism

If the church wants to support people and families affected by disability, it needs to create ministries suited for the next generation of people with disabilities. These struggles will be on your church’s doorstep soon. But good news: Since Jill’s House opened, we’ve learned a lot and designed amazing programs that bring God’s Kingdom to families affected by severe intellectual disabilities. God has given us some great resource.

Jill’s House now serves more than 500 families, primarily here at our center outside of Washington, D.C., but increasingly through our programs in Colorado Springs, Los Angeles, Austin and elsewhere.

What are we doing? We give families a night or two off each month. Jill’s House provides long stretches of respite, with most stays giving parents more than 40 consecutive hours “off duty.” These periods of respite involve keeping children at Jill’s House overnight so that parents can catch up on sleep and re-engage socially. We do this so that the physical rest we give will point to the true spiritual rest that can only come from Jesus.

It’s our privilege to serve these incredible parents by caring for their children in Jesus’ name. God has not given us the power to heal intellectual disability, but he has given us the resources we need to provide this life-changing service to families. As we wait for God to restore every mind and body, we will keep working until every family affected by disability—whether Down syndrome or autism—has respite within reach and access to a church that embraces them.

To learn more about Jill's House go to jillshouse.org.

If you'd like to learn more about Jill’s House OXYGEN3 weekend mission trip go to oxygen3.org. OXYGEN3 gives your team a chance to serve children with intellectual disabilities under the guidance of Jill’s House’s experienced professionals.

By / Sep 10

Prenatal testing is changing your congregation and the population of individuals with special needs. But before the wave hits you, I want to help you get prepared.

Why should you listen to me? In 2010, backed by McLean Bible Church and its renowned disability ministry, we opened Jill’s House. God has been amazing and, already, no one in the world provides more overnight respite to families raising children with intellectual disabilities than we do.  

But the people who showed up – and those who didn’t show up – surprised us. So, from our position on the front lines, I want to let you know what your church can expect so that you can do something about it.

Ministries within the church change based on needs and wants. For example, more churches have ESL classes, while fewer have sewing circles. Your church may have closed its bookstore and library but has since opened a ministry for people wrestling with porn and sexual identity. More churches are podcasting and fewer are distributing cassettes (though my 2002 Honda Accord and I still rock some vintage sermons from 1996).  

When we think of people with special needs, our minds often dance with pictures of happy children with Down syndrome. Yet, in our day and age, that’s a misleading picture that will not equip us for effective ministry. Here’s why:  

Fewer people with Down syndrome

First, the majority of families that learn that they’re having a child with Down syndrome no longer bring those kids to term. Tragically, they abort. Prenatal testing has become a part of routine care for expecting mothers. These tests can be done at 10 weeks. When a mom receives the report that her unborn child has Down syndrome, she faces a choice: prepare for the child with a disability she seldom understands or abort.  

A hyperbolic friend recently told me, “The only people who have kids with Down syndrome are Christians and poor people.” Overstated? Sure. On the right track? Sadly, yes. If you are a baby conceived with Down syndrome, you are probably aborted.

So there are fewer people with intellectual disabilities now, right? No.

More people with autism  

Second, the number of children diagnosed with autism spectrum disorder has increased by 30 percent over the last two years. In March 2014, the Center for Disease Control and Prevention released new data on the prevalence of autism in the United States. The study identified one in 68 children as having autism, a drastic change from the 2012 statistic indicating one in 88 children were affected.

This combination of prenatal testing and the increase in autism diagnoses is quickly changing the disability community in America. A survey of the kids we serve at Jill’s House reflects that change. When our ministry opened, we thought we’d mostly have people with Down syndrome and a handful of others. So we staffed thinking of these higher-functioning kids. We were mistaken.

Of the children we serve, more than 50 percent have autism, 20 percent have Down syndrome, 20 percent have other diagnoses such as a brain injury or cerebral palsy, and 10 percent have other chromosomal abnormalities. The children with autism require a lot more care. Their families come to us much wearier than other families due to the frequent meltdowns and their kids’ struggles to communicate.

In our work with this population, we’ve learned that parents raising children with autism are 60 percent more stressed than the rest of the population. Their divorce rates are 80 percent higher. Their child’s antisocial behaviors and limited ability to communicate becomes a strain on the whole family. Parents sleep less, feel isolated, and sense a loss of control. Marriages crumble and siblings feel neglected. These families need our support.

It slowly dawned on us that, in initially designing our ministry for higher-functioning children, we had brought a knife to a gunfight.

Ministering to families affected by autism

If the church wants to support people and families affected by disability, it needs to create ministries suited for the next generation of people with disabilities. The gunfight will be on your church’s doorstep soon. But good news: In the four years since Jill’s House opened, we’ve learned a lot and designed amazing programs that bring God’s Kingdom to families affected by severe intellectual disabilities. God has given us some great weapons!

Jill’s House now serves more than 500 families, primarily here at our center outside of Washington, D.C., but increasingly through our programs in Colorado Springs, Los Angeles, Austin and elsewhere.  

Here are some comments from the families we serve around the country:

“Jill’s House saved our lives. When I think about what would have happened to us without Jill’s House, I shudder.”

“Jill's House is a blessing beyond belief. It’s nice to have a weekend with fewer responsibilities, without tube feedings and diaper changes and to have someone else do the bathing and lifting. I love my child, but seeing his face light up when we pull up to Jill's House makes me feel like the weekend is as good for his soul as it is for mine. Thank you!”

“The respite time that Jill's House allows my husband and I to have is irreplaceable. The peace of mind it gives us is indescribable.”

“Our son is 8 years old, and this is the first time that I have ever trusted anyone to keep him . . . much less overnight. What a gift. You have refilled my pitcher so that I have something to pour out to others now. THANK YOU!”

What are we doing? We give families a night or two off each month. Jill’s House provides long stretches of respite, with most stays giving parents more than 40 consecutive hours of “off duty.” These periods of respite involve keeping children at Jill’s House overnight so that parents can catch up on sleep and re-engage socially. We do this so that the physical rest we give will point to the true spiritual rest that can only come from Jesus.

Bringing this disabilities ministries to your community

God has allowed us to become some of the experts, and we’re excited to pray with you about ways to bring this ministry to your community. We’d also love to have a team of 10 to 20 volunteers from your church come on our weekend mission trip.

It’s our privilege to serve these incredible parents by caring for their children in Jesus’ name. God has not given us the power to heal intellectual disability, but he has given us the resources we need to provide this life-changing service to families. As we wait for God to restore every mind and body, we will keep working until every family affected by disability—whether Down syndrome or autism—has respite within reach and access to a church that embraces them.