Arthur Caplan, writing at MSNBC.com, reacts to a report by the Associated Press that genetic testing is leading to the birth of fewer and fewer children with Down syndrome and other genetic diseases in the United States. An excerpt:

On a trip to Ireland a few years ago, I was struck by a number of faces among the crowds. They were children with the tell-tale look of Down syndrome.

What struck me was the realization that I hardly ever see these young faces out on the street in the United States.

… Reducing the burden of disease is obviously a good thing. But genetic testing of parents, and, as is now happening with increasing frequency, embryos, raises some difficult ethical challenges as well.

… As some families with a Down syndrome child have noted, fewer kids with Down may mean fewer public programs, fewer resources in schools and for housing and less political clout. If some genetic diseases begin to fade away, will society’s willingness to provide support for the diminishing numbers of those born with such diseases fade as well? And are we headed to a time when parents who choose not to be genetically tested find themselves condemned as morally irresponsible parents?

Caplan is director of the Center for Bioethics at the University of Pennsylvania.

Carrier screening, embryo screening and prenatal testing are credited

Hot-button issues: Abortion, embryo destruction and eugenics

By Marilynn Marchione, AP/USA Today:

An investigation by the Associated Press concludes that some inherited diseases are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A study in California found a reduction of almost 50 percent in the number of babies born with the most severe form of cystic fibrosis because many parents chose abortion.

Geneticists and other experts say a growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

An excerpt:

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics — selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people.

… “We’re definitely seeing decreased rates of certain genetic disorders as a result of carrier screening,” said Dr. Wendy Chung, clinical genetics chief at Columbia University.

… Eliminating disease is a noble goal but also “should give us pause,” [Dr. Barron Lerner, a Columbia University medical historian] wrote recently in the New England Journal of Medicine.

“If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?” he asked.

Related story: Sequenom unveils first trimester tests to diagnose cystic fibrosis, sex of fetus

In an essay that’s in the most-viewed spot at the [Toronto] Globe and Mail’s website, Edmonton mom Sue Robins says she felt as though she’d been slapped when a fellow preschool mom asked her why she didn’t get prenatal testing. Robins’ son, Aaron, has Down syndrome. After escaping to her car, Robins burst into tears. An excerpt:

Why do I have to justify my son’s very existence? Why isn’t it okay that he’s alive? What are you afraid of?

For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.

One day it won’t just be “us.” With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.

What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”

When you can answer those questions, I will answer your questions.

From the San Diego Union-Tribune, ABC News, Reuters:

Sequenom, a diagnostics testing and genetic analysis company, has announced it will pay $14 million and an undisclosed amount in stock to settle an investor class-action lawsuit over mishandling of data in the development of a potentially lucrative prenatal test for Down syndrome. The company did not admit wrongdoing.

The lawsuit came after the company’s stock lost more than three-quarters of its value last April. The company said then that its projections of the reliability of its prenatal test were not reliable, and said unnamed employees had not handled test data properly. Five top officers were fired and another resigned.

Investigations by the Securities and Exchange Commission, the FBI, and federal prosecutors are still pending.

BNET columnist Jim Edwards said changes in corporate governance announced as part of the settlement suggest that lawsuits against the company “seem to have introduced adult supervision at a company in dire need of it.”

Sequenom officials had estimated that the worldwide market for a prenatal test for Down syndrome is worth between $3 billion and $5 billion.

Earlier posts here.

Dana Goldstein, an associate editor at the Daily Beast, says improved prenatal testing could well reduce the number of secular, educated families who have children with Down syndrome.

She interviews parents of kids with DS, who say they hope that doesn’t happen. An excerpt:

Rachel Adams [a professor of English and American studies at Columbia University whose son has Down syndrome] describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Adams sees a contradiction in our society’s increasingly friendly bearing toward disabled people and its obsession with developing ever more revealing genetic tests. “Now that I have Henry, I go from such optimism to such extreme worry,” she says. “There are ethicists who ask, ‘At what cost to humanity is the elimination of whole categories of people?’ You’re living with these contradictions—wanting women to have complete reproductive freedom but wishing the choices they had were conveyed to them in a different way.”

In the Life and Style section of the [UK] Guardian, a lengthy first-person account of a couple who chose abortion after prenatal tests brought a diagnosis of Down syndrome. Nick Hinton reports that the decision gradually tore his family apart. An excerpt:

I spent a lot of time wondering where it had gone so horribly wrong. Was the decision to terminate the pregnancy to blame? Not in itself, though I worried that my insistence on its being Fiona’s decision was something of a cop-out. Perhaps I should have offered myself as more of a sounding-board or even a punch-bag. Fiona never reproached me with a lack of support, or even hinted at it. But that dreadful period undoubtedly opened up a crack between us, a crack that later deepened into a rift that could not be healed.

‘Welcome the exceptional‘

The editors of Christianity Today call on congregations to remove the subtle attitudinal barriers that serve to exclude people with disabilities from communities of faith.

Negative attitudes can have wide-reaching and damaging effects, the editors write, citing as an example the estimated 90 percent abortion rate among pregnant women who receive a prenatal diagnosis of Down syndrome. An excerpt:

It’s not as if churches do not try to extend compassion to people with disabilities. But we tend to think of the disabled as people we minister to, by offering worship and other opportunities to them. [The AAPD's Ginny] Thornburgh reminds us that “those of us with disabilities have enormous gifts and talents to bring to the church. We are not a project. We are on this earth for a unique reason.” Churches would be wise to remember that people with disabilities are like the rest of the congregation: They can contribute mightily to the work, witness, and leadership of the church and community.

… [A] sacred friendship often begins when a mother in the church gives birth to a child with a disability, and the church rallies around the family. That action says, “We will journey with you and this beloved child. We will not abandon you.”

As Thornburgh suggests, celebrating the birth of every child, regardless of prenatal test results, is the first act of friendship that can transform not only churches but also entire societies.