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

Reproduction and Our Modern Attitude

Our guest blogger is Aaron Costerisan, this year's Center for Bioethics Fellow:

In an article entitled 'Reproduction Revolution: Sex for Fun, IVF for Children,' Jo Whelan marvels at our change in attitude toward reproduction since Louise Brown became the first “test-tube” baby in 1978: “Who would have predicted how common IVF would become back in 1977, when Louise Brown was just a speck in a Petri dish?”

Today many couples are using IVF (in vitro fertilization), with a success rate at least equal to that of natural procreation. In addition, couples are increasingly relying on IVF combined with pre-implantation genetic diagnosis to select embryos that do not have inherited diseases.

Whelan sees in these developments the seeds of a radical shift in the way we view sex and reproduction. Might it be feasible in several decades for most people to bring children into the world through IVF, whether or not they suffer from infertility? Do the reigning attitudes in science and medicine indicate that, should such a possibility become reality, parents would be considered irresponsible not to screen for the best embryos? The rising practice of selecting embryos on the basis of male or female gender might be a clue to where we are headed.

While it may seem cruel or heartless to deny parents the opportunity to prevent having a child with a fatal or debilitating disease, we must ask, “At what cost?” Selection implies that other embryos – other living human beings – are passed over, and then “discarded” or indefinitely frozen. And the more embryos one has to choose from (or discard), the better the chances of finding a “good” one.

In addition, reproductive and contraceptive technologies are bringing about a widening divide between sex and procreation. More and more, we determine the timing and circumstances of child-bearing. By removing conception from the “imprecise” realm of nature, we can decide just what kind of baby we will have.

Surely, neither contraception nor assisted reproduction is illegitimate in all cases. Yet we cannot ignore the ways in which exercising such control can cause us to view our bodies as mere instruments for our pleasure, and our children as the products of our willful, careful choosing – arriving on our terms, fulfilling our hopes, and more or less matching our expectations.

Full article in the New Scientist: http://www.newscientist.com/channel/sex/mg19225741.300

The Business of Babies

Debra Spar, an economics professor at Harvard, has written a nice piece that shows just how pervasive the desire to have children can be, and how easily economic manipulation can take advantage of it. She writes:

To those who suffer from it, however, infertility is a wretched curse — a disease that isn’t really a disease, with an outcome that seems to defy nature . . . many infertile couples become consumed with the desire to conceive, and are willing to do whatever it takes to create a child of their own.

The science of assisted reproductive technology (ART) has taken advantage of this desperation-driven market. In some cases, it has resulted in blessings for those who can afford such techniques as in-vitro fertilization or intra-cytoplasmic sperm injection, but at what cost for society as a whole?

Many are concerned about the commodification of reproduction, with the possibility that we will see children more as product than progeny. What are the limits? Do all couples have a right to reproduce, to have a child "of their own?" What about the unintended consequences of the unfettered drive to have a technological baby?

Many couples who engage in ART haven't really thought through the long-term implications of their decision. That is one reason there are over 400,000 frozen embryos in cryogenic storage in the U.S. alone. The couples who "own" these embryos have created a legal and moral dilemma. Are they persons or property? Should they be destroyed, given over for stem-cell research, or donated to childless couples who wish to adopt them? Most couples have deferred their decision to some later date, even if they have no intention of implanting the embryos themselves.

Sympathetically, Professor Spar recognizes that regulating the fertility industry and its excesses will be difficult: "These decisions will not be easy, since they will inevitably involve drawing thin lines across a slippery slope and subjecting private tragedies to public scrutiny."

Professor Spar's article can be found at: http://www.stnews.org/Books-2929.htm