Op-ed: Down Syndrome Diagnosis Should Not be a Death Sentence

Many Pennsylvanians know someone whose life has been touched by Down syndrome. Despite the challenges that this condition creates, individuals with Down syndrome undoubtedly can lead full, productive, joyous lives if they are given the chance to do so.

I have known a number of people who have been affected by this condition, including my friend Kyle. He is in his 30s and holds down a full-time job at Home Depot, where his infectious smile is a joy to customers. He has worked hard his entire life, and he richly deserves every measure of success that he has already achieved.

In the course of my travels throughout Lancaster County as an elected official, I also had a chance to meet the Shaw family and their incredible 3-year-old daughter Eva, who has Down syndrome. When the family first learned of her prenatal diagnosis, a genetic counselor repeatedly encouraged the family to consider abortion, in spite of their objection to the practice.

Instead of following the counselor’s advice and terminating the pregnancy, the Shaws chose a different path and made it their mission to give her every chance at happiness. Today, Eva’s language and walking skills are progressing extremely well. She also loves to sing, and her father Justin often spends entire car rides with Eva singing duets about what each barnyard animal says while she belts out her own spirited rendition of “Old McDonald Had A Farm.”

To say that Kyle and Eva enjoy a life worth living is an understatement. As her father describes it, Eva experiences all of the same joys, challenges, victories and tribulations that any other child faces; she just takes the scenic route.

Today, there are more resources available to help families who are touched by Down syndrome than ever before. In particular, our schools have made tremendous advances in educating students who are affected by this condition, and more and more young people are attending college as a result. Sadly, many physicians and counselors still push families touched by Down syndrome toward abortion instead of giving their children a chance at a happy life.

A diagnosis of Down syndrome should not be a death sentence. That is why I recently announced plans to introduce a bill that would prohibit the practice of selectively aborting a baby based solely on a diagnosis of that specific genetic abnormality. The practice of selectively aborting babies based on a child’s gender is already prohibited; a child who shows the possible presence of Down syndrome should receive the same level of protection.

This bill is not about the legal and ethical debate regarding abortion. It is about eugenics – the heavily criticized practice of discarding children if they do not have certain “desirable” traits. If we continue to throw away babies due to a prenatal test that indicates the possible presence of a genetic abnormality, where does that practice stop?

It is important to note that the prohibition only applies if the sole reason for having an abortion is the Down syndrome diagnosis. Nothing in this proposal would interfere with the existing ability of a woman to obtain an abortion in cases of rape, incest or endangerment to the mother.

My bill is narrowly aimed at preventing the extermination of an entire class of people based solely on a disability. Regardless of whether you are pro-life or pro-choice, we should all be able to agree that discriminating on the basis of a disability is wrong – especially when that discrimination leads to the death of a child.

Many of my colleagues in the Senate have made extraordinary progress toward helping individuals with disabilities live a happy, healthy and productive life. Most recently, Senator Lisa Baker spearheaded the creation of the Achieving a Better Life Experience, or ABLE program, a landmark new law that helps create more opportunities for families raising or caring for individuals with disabilities.

I am hopeful that my colleagues will join me in taking the next step toward helping individuals with Down syndrome to enjoy all of the love and joy that life has to offer, by protecting their right to be born and exist in the first place.

CONTACT: Terry Trego (717) 787-6535

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