Bio-ethics, Eugenics, Abortion, Disease, & Genetic Screening: The new birthing decision process

If you were having a baby and the test showed that the baby would have Down’s Syndrome, Tay-Sachs, deformed limbs, a cleft plate, deafness, dwarfism, skin disease, or any of a host of other known diseases, would you still have the child?

(Link to the original story in the New York Times. Subscription required but worth it.)

What defect, if any, is reason enough to end a pregnancy that was very much wanted? Shortened limbs that could be partly treated with growth hormones? What about a life expectancy of only a few months? What about 30 years? Or a 20 percent chance of mental retardation?


Activists for the rights of the disabled say that a kind of grass-roots eugenics is evolving that will ultimately lead to greater intolerance of disabilities and less money for cures or treatments. And even some doctors who perform abortions are uncomfortable as some patients choose to quietly abort fetuses with relatively minor defects.

No one tracks the number of abortions performed for medical reasons, but obstetricians say several factors are most likely contributing to a growth in their frequency, including broader availability of new screening technologies and more pregnancies among women over 35, who are at greater risk of carrying a fetus with chromosomal abnormalities.

 About a dozen tests for genetic mutations that could cause diseases or disabilities in a child are now regularly offered to pregnant women and their partners, depending on their ethnicity and conditions that run in their families.

 More than 450 conditions, including deafness, dwarfism and skin disease, can be diagnosed by testing fetal cells, with more than 100 tests added in the last year alone. African-Americans are widely screened for sickle-cell anemia, and a panel that now includes nine tests for diseases common to Ashkenazi Jews has virtually eliminated the birth of children in the United States with Tay-Sachs, a fatal early childhood genetic disorder.

 Next month, the Baylor College of Medicine plans to introduce a pilot program with perhaps the largest panel of prenatal tests ever offered. For $2,000, a pregnant woman will be able to have her fetus tested for some 50 conditions that cause mental retardation.

And this family of Orthodox Jews decided to avoid the pregnancy altogether and do in-vitro fertilization and then test the cells while they were still in the petri dish:

Some parents are trying to avoid both abortion and disease by opting for in-vitro fertilization, even if they do not need it to conceive. A new procedure can test embryos in the petri dish for chromosomal abnormalities or a genetic condition known to run in a family. That is how Sara and Benjamin Porush of Chicago came to have their 21-month-old triplets. After their first son was born with familial dysautonomia, which causes difficulty breathing and swallowing and a shortened life, the couple, who are Orthodox Jews, had 16 embryos tested for the disease, 9 of which had the gene mutations for it. Ms. Porush was implanted with three of the others.

It also talks about the backlash that some parents are receiving for the decision that they have made:

But some couples who terminate pregnancies for fetal health conditions say no one has a right to judge them. A child psychologist in Atlanta who terminated a Down syndrome fetus earlier this year said she was outraged by people who told her, “If you have to have a perfect baby, you shouldn’t be a parent.”

“I was like, `What!?’ ” said the psychologist, who is 35. “I’ve always been pro-choice, but now I’m pro-choice with a vengeance. Don’t tell me I have to have a baby with Down syndrome just because you say so.”

This is an unusually long and very well-written article that outlines the new and extremely complex decision process that parents across the western world are facing as genetic screening advances by leaps and bounds. I highly recommend reading it.