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.

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)

Writing on Politico.com, Ben Smith says Sarah Palin is transforming herself into the leading figure of the anti-abortion movement, thanks largely to the presence of “her disabled son, Trig.” Palin’s youngest child was born with Down syndrome after his mother received a prenatal diagnosis.

Smith says Trig has been a “conspicuous presence” on Palin’s book tour, carried by his mother as the former vice presidential candidate descends from her tour bus or private jet to meet fans, and then handed off to an aide or local dignitary as she autographs books.

He says Trig has become both a “powerful political rallying point and a kind of shield,” with allies claiming her opponents believe she should have had an abortion rather than bearing her son.

“Mother and son have become objects of the left’s unrelenting scorn” and of hatred reflecting “a broader societal bias against disability,” wrote Christian conservatives Gary Bauer and Dan Allot.

Those people are, in fact, rather hard to find, with Bauer and Allot relying on obscure bloggers for evidence of vitriol.

(Photo by AP/Politico)