Down Syndrome Babies: An Endangered Species?

Recent developments in genetic testing are revolutionizing the ability to test for a variety of genetic disorders in unborn babies. Before now, this required a difficult, painful, and potentially hazardous procedure called amniocentesis, ususally reserved for expectant mothers over the age of 35. Amniocentesis itself carries a 0.5% miscarriage rate, but it has been used to diagnose such conditions as Down Syndrome, Tay-Sachs Disease, Sickle Cell Anemia, or Duchenne Muscular Dystrophy.

Now there is a simple blood test, recommended for all pregnancies, that reduces the risk for moms, but may dramatically increase the number of genetic disorders diagnosed prenatally. If past history is any guide, this means that 90% of women whio are told their baby has Down Syndrome will choose to have an abortion (reference).

What will be the results of such selection? Well, for one thing, fewer babies with diabilities - and this has many parents who advocate for them rather worried:

A dwindling Down Syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain (NY Times).

Parent advocates are worried that doctors don't know how to handle the genetic information they now so easily obtain with two blood tests and a sonogram. Many physicians agree -- the best way to share a genetic diagnosis is not: "Your baby is going to be mentally retarded, you should have a pregnancy termination."

This does not mean that the future will be easy for parents who decide to carry their diabled child. But parents of the disabled see the new form of testing as one more step towards a society that doesn't welcome any imperfections. Commentator George F. Will called it a "search and destroy mission" for the handicapped (Will has a grown son, Jon, with Down Syndrome). In complaining about the new recommendations, he adds:

What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon (Newsweek).

Imagine a society where every one of us is genetically perfect, where none of us must strive for the small, daily steps of success that mark our physical, emotiojnal, and mental growth. I, for one, would not want to live there.

New York Times Article

Brave New Fathers

As a follow-up to Aaron's blog last week about reproductive tech, I came across an article in the LA Times. The story raises profoundly disturbing questions about how society views reproduction and having babies, and crosses the line into the chilling realm of eugenics.

The news article starts out with Chad and David, a gay couple in Fairfax, Virginia, sorting through possible ‘egg donors.’ Chad likes #694, who scores high in academics and music, but David prefers #685, who has the edge in athletic ability and dance.

Here’s the plan: the two men hope to have a child through gestational surrogacy. This will involve paying a carefully-chosen woman to provide the eggs, since they want to “exert some control over the child’s genetic makeup.” These eggs, combined with the men’s own sperm, would produce several embryos by in vitro fertilization. Some of the embryos would be implanted into another woman, also paid for her services, who would carry the baby (or babies) to term. In this way, Chad and David hope to become fathers.

Do you have any questions about this kind of arrangement? Here are some of my concerns:

• Setting aside any moral objections to homosexual relationships, research has shown that children need both male and female role models for proper development.
• According to Chad and David, this “felt more like catalog shopping than human reproduction.” It seems like human beings and their parts have become commodities to be bought and sold on the open market.
• Selecting one person for reproduction over another based on genetics denies the ethical principle of equality of persons. Such eugenics ideas have discriminated against the poor and disadvantaged, and history has taught us we pay a high price.
• Speaking of eugenics, what of the embryos that are not implanted? Surely those with genetic defects will be discarded, violating the sanctity of human life. At the very least, leftover embryos will be frozen, leaving them with an uncertain future.
• What of society at large? Have we so instrumentalized procreation that children are more a ‘product’ than actual sons and daughters?

My thanks to Stephen Grabill (www.commonnotions.blogspot.com) for bringing this article to my attention.

Original LA Times article:
www.latimes.com/news/nationworld/nation/la-na-surrogacy29oct29,0,5016763.story

A 'Genetic Outlaw' Speaks Out

A law professor in Minneapolis has recently become an "outlaw" in the eyes of some. Her crime? She chose not to have an abortion when she received a prenatal diagnosis of Down syndrome. Elizabeth Schiltz had her baby anyway, and writes about her experience in Defiant Birth: Women Who Resist Medical Eugenics (2006, Spinifex Press). She also tells of other women who have faced severe pressure to abort because they were carrying a less-than-perfect baby.

Modern technologies have created a crisis of too much information. From the older methods of amniocentesis and chorionic villus sampling, to more recent techniques for preimplantation genetic screening of embryos, women have more reasons not to have their babies than ever before. It is well known that almost 50% of fertility centers now permit screening of embryos for gender, with the “wrong” sex discarded. Many centers are able to eliminate the carriers of certain genetic traits, some of which have little or nothing to do with disease.

Primplantation genetic diagnosis, or its modern cousin, preimplantation genetic haplotyping, can now screen embryos for 6,000 different diseases. This has led Professor Schiltz to remark, “I can't help but see 6,000 new reasons that parents will be branded as sinners or made to feel socially irresponsible for bringing their children into this world.”

What the eminently quotable James Russell Lowell has said about mishaps is surely true of modern biotechnologies: they are like knives that either serve us or cut us, as we grasp them by the blade or by the handle. The ultimate victim of all this will be human nature, sacrificed on the altar of our desire for perfection.

For more about Elizabeth Schiltz: http://www.businessweek.com/technology/content/jul2006/tc20060720_148057.htm