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.

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.

From the [UK] Times:

A leading geneticist writing in the journal Nature predicts a dramatic increase in parental demand for genetically screened “designer babies” over the next decade.

David Goldstein of Duke University expects to see many more couples screening embryos for genetic variations that substantially raise the risk of common conditions like diabetes, heart disease, autism, schizophrenia and epilepsy.

Embryo screening, which involves pre-implantation genetic diagnosis, is currently used to identify mutations that lead inevitably to serious disease, like cystic fibrosis. Wider use of the process could encourage fresh controversy over the ethics of designer babies, as it would involve screening out embryos that have an elevated risk of developing disease but are otherwise healthy.

In his Nature article, Goldstein called for a broad public debate about the ramifications of widespread genetic screening. “We should think about an appropriate dividing line,” he told the Times. “Most people are in favor of allowing this when a disease is severe, but are more uncomfortable with marginal disease risks. It’s something we are going to have to think hard about.”

Writing in the [UK] Daily Mail, mother Deborah Dooley responds to a neighbor’s comment that she should have terminated her pregnancy rather than give birth to her daughter, who has cystic fibrosis. Daughter Flo is now 20 and is studying dance. An excerpt:

Flo is bright, beautiful, funny, affectionate, clever and hard-working. Yet she is also deemed to be ‘disabled’. To me, this changes nothing….

Very occasionally, I consider the fact that only a last-minute decision stopped me having a test that could have denied my lovely daughter life.

For a brief, sad and always shocking moment I wonder what life without Flo might have been like. Then I think about the huge joy she’s brought us, and how lucky we are to have her – and I feel doubly blessed.

Dooley’s daughter adds:

I do understand the dilemma that parents can go through — I just wonder if people who are so-called ‘ able-bodied’ really take the time to think about those who aren’t: what it means to be disabled, the variations on what we call disabled, and what these people can bring to society.

… I don’t think that being labelled as not quite right, or disabled — or whatever — before you’re even born should mean that you have no right to life. In my opinion, the world needs so-called, less-than-perfect people, those people can live full and happy lives — I believe I’m living proof of that.

(Photo from the [UK] Daily Mail)