Three Views: If a Cure for Down Syndrome Is Found, Should Parents Accept It?
To many families, the limitations are no match for love.
APRIL 9, 2014 Christianity Today
Cure, But Don’t Harm
For years, I have grappled with whether I would welcome a cure for Down syndrome for Christina, my 11-year-old daughter. I was once forced to answer the question on live television in New York. "Would you take Christina’s Down syndrome away if you could?" talk-show host Michael Coren asked me.
Shocked, I stared into the camera and said, "I love her as she is. Down syndrome has shaped her, but it does not define her. Yes, if there were a safe treatment to improve her memory and learning, I would give it to her."
It sounded like a politician’s answer, but it is the truth. I love my daughter’s loving and spontaneous personality. And I fear what a cognitive "cure" would do to affect her singular qualities, innocence, and complete lack of concern for the opinions of others. She has taught our family how to love unconditionally and approach God with childlike confidence.
Still, Down syndrome places real limits on Christina’s life. She gets frustrated often by her inability to communicate effectively. It breaks my heart. When she was 5, she could speak very well. But her verbal abilities sharply declined after that. I can’t help hoping that one of the many cognition-improving medicines currently in clinical trials may be a "cure" to help her speak and make friends.
I worry that it will become a societal goal to eliminate these loving members of society rather than to help them reach their potential. Jérôme Lejeune, the renowned French pediatrician who discovered the genetic cause of Down syndrome, sought treatments that physicians could apply in utero. In the late 1960s, Lejeune, a Christian, became one of the most outspoken pro-life scientists at a time when prenatal diagnosis followed by abortion was growing common. He called such abortions "chromosomal racism."
I interviewed his daughter, Clara Lejeune Gaymard, who shares her father’s pro-life convictions and wrote his biography. She told me that after her father spoke out on behalf of children with Down syndrome, his career slumped. "He was like a pariah," she said. "But he accepted that. He thought he was doing his duty."
A complete cure or better treatments may or may not come. But I agree with the "first, do no harm" code among ethical physicians. If chromosomal therapy is proven effective, long-standing, and not damaging to the personality and temperament of a child with Down syndrome, then I would welcome it for my daughter and encourage others to seriously consider it. But right now, it is urgent to convince expectant women who receive a prenatal diagnosis of Down syndrome that by mothering a child with special needs, they will get rare but dazzling glimpses of the pure love of Jesus.
For me, parenting a child with special needs reminds me of Mother Teresa’s "call within the call"—to special motherhood, my most blessed vocation.
Leticia Velasquez, editor of A Special Mother Is Born, blogs at cause-of-our-joy.blogspot.com.
Why Do We Seek a Cure?
Anyone who answers affirmatively to this question should ask themselves: Why should we seek a cure in the first place?
Most of us who know children with Down syndrome are blessed to be around them. Sin excepted, there is nothing inherently wrong with them. I am an older brother to a 38-year-old man with Down syndrome. He is just as capable of giving and receiving love as is our middle brother, albeit in his own way. He has taught me how to love and care for others, even as he has been as ornery as they come when he has not gotten his way.
My brother fully reflects the image of God, which Christ came to redeem. To pursue a cure for Down syndrome reflects a misunderstanding of how it uniquely identifies and characterizes individuals. To remove the syndrome is to eliminate the many ways in which each of their lives adds immeasurable value to the world.
To be sure, the impairments related to the syndrome are impossible to fully determine before birth. Some extreme conditions can be fatal for child or mother. In those cases, the health of the mother ought to be our primary concern. And researchers should invest in finding clear ways to remediate any specifically diagnosed effects related to the syndrome.
Further, we should persist in achieving new interventions to improve the quality of life of people with trisomy 21 (the technical description of Down syndrome) and their families.
In all of these cases, however, we ought not to presume that individuals or their caregivers are "suffering." More often than not, our assumptions about suffering are about our own poorly informed fears and anxieties. These distorted perceptions are internalized by people who might not otherwise agonize about the quality of life that they lead.
I believe we should embrace the lives of those with Down syndrome because of how I see the church declaring and manifesting God’s redemptive love for the world. So long as the church is around, there ought to be people and families ready to welcome these children into their lives. If some mothers feel overwhelmed by the prospects of raising a child with Down syndrome, we ought to be the first to provide the comprehensive support needed. This reminds parents that their child can flourish and that possibilities can be re-imagined. If parents are unable to rise to the task, then Christian families ought to have a chance to step in and provide these children with the love and care that facilitates children reaching their potential.
In such a world, few people will be worried about finding a cure for Down syndrome. Even better, we will have found a more important cure—banishing the stigma related to Down syndrome and healing the world of its contempt for a vulnerable but beautiful group of people.
Amos Yong, author of The Bible, Disability, and the Church, is dean of the School of Divinity, Regent University, in Virginia.
First, Do Research
Al and Ellen Hsu
Our younger son, Elijah, celebrates his ninth birthday in April. He has already benefited from enormous efforts to help him navigate his developmental disabilities due to Down syndrome.
These interventions improve his quality of life, and we receive them as gifts of common grace. So we are open to other potential treatments that could help him at genetic levels. In general, we support medical research that can unpack how things work and help us understand how Down syndrome affects the mind and body. At the same time, we are very cautious about claims that Down syndrome could ever be "cured."
Some reports about a potential cure have been misleading. Last summer, researchers at the University of Massachusetts discovered a natural "off switch" for the extra chromosome in cells in vitro. This opens up a promising new avenue for chromosomal therapy, but lead researcher Jeanne Lawrence cautioned that actual treatment may be many years down the road.
Down syndrome is a genetic anomaly that has been hardwired into every cell of our son’s body. It is highly unlikely that any medical technology will be able to rewrite the code at that chromosomal level. Down syndrome is more of a permanent trait, like eye color or ethnic heritage.
When researchers or media reports talk about a "cure" for Down syndrome, they are usually exploring ways to enhance cognitive ability and ameliorate some of the limitations. This is an imperfect analogy, but such treatments could either be like eyeglasses, or more invasive and permanent, like laser surgery.
Just as we wouldn’t expect everybody to have corrective eye surgery, not every parent should be expected to accept a cure for Down syndrome. Many parents are reluctant to mess around with their child’s DNA, seeing Down syndrome as a chromosomal difference to be accepted rather than a disease to be cured.
We have concerns that any cure would have unknown risks. Every new medical technology has unintended consequences, medical and physiological. There is already a rich-poor gap among children with special needs. Some have access to resources to help them function better, while others don’t. As Christians, we should be aware of society’s tendency to marginalize the have-nots.
Whether we would accept a "cure" would depend on the medical risks involved as well as the technical mechanisms of what would make the treatment effective. Some treatments may have significant personality-altering side effects even when they work. Parents would need to discern whether medical treatment poses a risk to their child’s fundamental personhood or identity.
Our children are not problems to be fixed, but persons to be honored and befriended, regardless of their abilities.
We hope that as he grows, Elijah will have access to more possibilities to flourish. New research and treatments may well help him decide for himself what opportunities will be open to him.
Al and Ellen Hsu are the parents of Elijah and Josiah. At InterVarsity Press, Al serves as a senior editor, and Ellen serves as rights and contracts manager.