Eliminating Suffering or Eliminating People?

Imagine sitting in a doctor's office and receiving this news:

Good morning, Mrs. Santos. I have the results of the screening test you had last week, 12 weeks into your pregnancy. The test indicates a high likelihood that your baby will be a typically developing child, and I want to make sure you understand the implications of this diagnosis. Typically developing children are at risk for a number of physical, emotional, and mental complications throughout their lives.

Although the risks are many, I will mention a few of the most prevalent. Your child has a 30 percent risk of obesity, an 8 percent risk of diabetes, and a 10 percent risk of clinical depression. Each of these factors can result in premature death. One in 166 children in the United States develops autism, and one in 500 dies within the first few months of life from Sudden Infant Death Syndrome.

In addition to the potential physical and mental problems, I want to make sure you've considered the financial costs associated with a typically developing child. Do you think you can afford to raise this child, given the current economic environment, rising health care costs, and the rising cost of higher education?

The decision regarding this pregnancy is entirely up to you. I just want to make sure you have the information you deserve, based on the test results.

Advances in technology are offering women more information about their pregnancy than ever before. Marilynn Marchione, of the Associated Press, reported last week on the increased use of genetic screening to "curb genetic diseases." Those she interviewed see genetic screening as positive, a means to ensure that "some of mankind's most devastating inherited diseases" will continue to decline.

Medical information can be useful in making decisions about trying to conceive children biologically, and even about how best to care for children once they are born. But when it comes to genetic screening, using medical information to eliminate disease often means using such information to eliminate life.

Genetic screening is available at three different points during pregnancy. First, before conception, a couple who is considering having children can be genetically screened to understand the risk of passing along diseases such as cystic fibrosis, Tay-Sachs, Huntington's, and a variety of lesser-known conditions. But knowing that you are a carrier does not guarantee that your child will inherit the disease. In the case of cystic fibrosis, for instance, even if both parents are carriers, there is a 25 percent chance that their child will inherit the disease.

So if a couple knows they are carriers, wants to have biological children, and wants to ensure the children do not inherit the disease, a second round of screening is possible. Here, a couple can create an embryo or multiple embryos and screen them for disease. As Marchione reports, "a growing number [of couples] are screening embryos and using only those without problem genes."

Finally, prenatal testing is available once an embryo becomes a fetus. These tests typically identify chromosomal abnormalities such as Trisomy 21 (Down syndrome, the most common chromosomal abnormality), Trisomy 18, and Trisomy 13, among other disorders. At this point, a screening test may lead to genetic counseling, in which case a counselor will advise the parents about the medical risks their child may face throughout life. An amniocentesis can provide a definitive diagnosis in 99 percent of these cases, and based on that diagnosis, women have the choice to terminate, or proceed with, the pregnancy.

No parent wants a child to suffer. Screening tests at every level help humans to eliminate genetic disease and, therefore, human suffering. And yet Christians have good reason to be concerned about the use of these tests, and to advocate for the protection of human life, however it is given to us.

Screening tests offer general medical information. But a general medical summary never describes a particular person. And if it did, it could never provide holistic information about that person. Even the hypothetical typical child at the beginning of this article faces great risks of suffering and hardship in life. But to reduce any person—be they typically developing, or those with disease or disability—to a medical diagnosis is to treat them as less than human. We are more than a medical description.

Our daughter has Down syndrome. Studies show that 80-90 percent of women whose child receives a prenatal diagnosis of Down syndrome choose to terminate their pregnancy. (Many women, myself included, opt out of a prenatal diagnosis, so that statistic doesn't indicate that 80-90 percent of babies with Down syndrome are aborted.) The abortion rate demonstrates a pervasive belief in our culture that a child with Down syndrome is undesirable. Statistics are not as easy to come by for the genetic diseases discussed in this article, but the number of births of babies with genetic diseases has dropped since genetic screening became available, presumably due to a higher rate of pre-implantation genetic screening and the subsequent rejection of diseased embryos (and even embryos who have the possibility of developing the disease) and/or abortions.

I've read about other moms who say they are concerned about the decreasing number of individuals with Down syndrome in our culture because they worry that their children won't have friends and social and medical support. That's not what worries me. What worries me is that having fewer individuals with Down syndrome in this world will harm the rest of us.

I worry about the impoverishment of our culture as we insist more and more on conformity to a biological norm, and perhaps more particularly, in the case of Down syndrome, to a norm that is related to IQ. In the case of genetic screening, I worry that we will reduce individuals to a medical diagnosis, and that we will begin to value humans based on physical health rather than on their reflecting the imago Dei. I worry that we will begin to believe that life is something we ought to control instead of a free gift from God. I worry that we will assume suffering makes life not worth living, rather than seeking to care for one another, seeking out God's care on behalf of one another, in times of suffering.

I can say with confidence that our daughter Penny has been a great gift to me, to our family, and to our community. We would be missing out on the richness and fullness of life if she were not our daughter. Genetic screening offers possibilities for potential parents to make careful decisions about conceiving biological children. But when it is used to eliminate human life, genetic screening eliminates not just an embryo or a fetus. It eliminates a piece of our common humanity, and it impoverishes us all.

Amy Julia Becker is a writer, a student at Princeton Theological Seminary, wife to Peter, and mother to Penny and William. She blogs at Thin Places.