A Bioethicist’s Education

My nephew Pedro will be celebrating his first birthday in just a few days. Not having any children of my own, I cherish every moment that I get to spend with him. Unfortunately those moments are few and far between as Pedro and his parents live 5,000 miles away.

I can no longer imagine what my or my family’s life would be like without Pedro. Had his parents lived in the United States, however, it possible that he would have never been born.

This is because Pedro has Down syndrome, a common genetic abnormality that occurs in about 1 in 750 births. The condition can be detected prior to birth using a number of prenatal screening tools, including ultrasound, amniocentesis and chorionic villus sampling.

Women who receive a prenatal diagnosis of Down syndrome often choose to selectively terminate their pregnancy, so as not to bring a profoundly disabled child into the world. Some studies suggest that over 90% of all pregnancies with a Down syndrome diagnosis are terminated. But I wonder whether these women are making a truly informed and voluntary choice to terminate their pregnancies.

Don’t get me wrong — I am an ardent supporter of reproductive choice. Particularly when there is a high likelihood that a child will suffer from severe mental and physical disabilities, the parents should have the right to terminate the pregnancy. But is that the case with Down syndrome, and are parents being given accurate information and facts about the condition?

Almost all children with Down syndrome exhibit some form of cognitive delay. The average IQ of a child with the condition is 50, whereas the average IQ of a typical child is 100.

There are also a number of physical traits that are common among people with Down syndrome, including shorter stature and weaker muscle tone, a protruding or oversized tongue, and an unusually round face. They are also at higher risk for a number of serious health conditions, including congenital heart disease, gastrointestinal problems, and hearing loss.

Despite this, children born with Down syndrome today are likely to become active and contributing members to society.

A generation ago, most children with Down syndrome were institutionalized. Now, only the most severely disabled children are placed into long-term care facilities. A generation ago, the average lifespan of a child with Down syndrome was 25. It’s now twice that.

Educational support and tutoring, coupled with specialized physical, occupational and speech therapy, can minimize the impact of most of the mental and physical challenges that these children face. Many with Down syndrome go on to graduate from high school, and even college. They have jobs, pay taxes, and even get married and have children of their own.

For most with Down syndrome, their condition is not so physically and mentally crippling as to suggest that their lives are not worthy of living. In fact, this is probably true for many of the disabilities that we routinely screen pregnant women for. But when these tests come back positive and we are counseling parents about their options (including selective termination), we tend focus on the negatives.

Far too often we only talk about the mental and physical challenges that these children will face, the costs associated with treatment for these problems, and the burden on family and friends who care for individuals living with disabilities.

So profound is this bias that, during a recent seminar on prenatal screening and diagnosis of disability, a colleague and friend of mine — herself the mother of a young man with Down syndrome — remarked: “Does our life really seem that difficult?”

Before Pedro was born, and before I had the personal experience of having a family member with a disability, I might have thought, though probably would not have said, “Yes. Your life does seem extremely difficult to me.” Now it just seems like a normal life.

What a difference a year makes. In that short time my nephew Pedro taught this cynical bioethicist what twenty-five years of schooling could not: the lives of everyone, those with disabilities and those without, are to be cherished.

Deciding whether or not to terminate a pregnancy when there is a strong possibility that the child will be disabled is a difficult one. It’s a decision that only the parents can make, and only in accordance with their personal values. But we need to make sure they have enough information to make that choice.

This means not only talking about the challenges of raising a disabled child, but also of the joys. In addition to providing medical facts, we need to arrange for these parents to talk with others who have faced a similar choice, both those who decided to raise a disabled child, and those that make the difficult decision not to.

That’s the lesson I learned from my nephew.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 23, 2011. It is also available on the WAMC website.]

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About Sean Philpott-Jones

A public health researcher and ethicist by training, Sean holds advanced degrees in microbiology, medical anthropology, and bioethics. He is currently Chair of the Bioethics Department at Clarkson University's Capital Region Campus and Director of the Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai, and Director of two Fogarty-funded programs to provide research ethics education in Eastern Europe and in the Caribbean Basin. Until his term expired in August 2012, he served as Chair of the US Environmental Protection Agency’s Human Studies Review Board, an advisory panel that reviews the scientific and ethical aspects of research involving human participants submitted to the EPA for regulatory purposes.
This entry was posted in Down Syndome, Prenatal, Reproductive Rights. Bookmark the permalink.

2 Responses to A Bioethicist’s Education

  1. Thank you so much for this post Sean. As you know, I linked to it from my blog; you say some really important things here. And happy birthday to Pedro!

  2. Laura Woodward says:

    Hey Sean!

    I’d like to reply to this post on a couple of levels: as a special education provider and a mother of a profoundly Down’s child.

    Firstly, the most important piece of information here is missing: what is Pedro’s percentage? His family may not have the actual number but it is very relevant to the discussion on selective abortion of Down’s children. As I’m sure you know, children diagnosed with Down’s syndrome have varying percentages of the disability. The extra 21st chromosome is rated somewhere between 1-100% abnormal and that number is then provided to the parents either during prenatal screening or sometimes after the child is born. Once a child is born, the number is important as an indicator of the child’s potential ability, in addition to the many health concerns that necessarily come with Down’s. However, before the child is born, the number and the condition of the heart are really all the parents have to go on. In our case, our daughter’s prenatal screening showed an endocardial cushion and 100% Down’s syndrome. Translation: almost no life expectancy, and certainly no quality of life, even if the heart could be replaced at birth. We chose to terminate our pregnancy as a mercy to our unborn baby, not as a convenience for ourselves. At the same time, I work with children who have Down’s syndrome to lesser, yet varying degrees, and I have seen wonderful, loving children and families who accept their disabilities and work with them to the best of their abilities. These children are obviously blessings to those around them, but they are not easy, either. They have many medical needs, most commonly frequent sinus infections that can become quite serious and therefore expensive and time-consuming. Not every family is equipped to handle this level of involvement for the ENTIRE life of the child. Because as you know, in America, no-one gets a free ride. While the IQ of the Down’s child will be unique to that child, we can refer back to your point that the average will be around 50 – precluding almost any form of adult independence. So even if the (primarily) late-in-life parents choose to keep their (say,) 50% Down’s baby, they will be older adults when their child leaves the public education system – which in California is 21 – and needs some form of meaningful engagement during the day while the now (likely) retired parents plan their golden years around making sure their child has his or her needs met on a daily basis.

    In the end, the choice to have a baby with any disability is based on much more that whether you will enjoy his or her childhood. It must be based on the child’s quality of life – his entire life – and whether the parents, in conjunction with state or federal services, can meet those needs. If the answer is no, then I think parents make the responsible choice when they choose to terminate that pregnancy.

    Thanks for providing this forum for discussion on children and families with Down’s.

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