From the Philadelphia Business Journal:

The Children’s Hospital of Philadelphia is getting ready to open what it says will be the first comprehensive medical unit in the world for pregnant women carrying a baby with a known birth defect.

The $20 million Garbose Family Special Delivery Unit is being established so CHOP’s fetal medicine and surgical specialists can provide care — from prenatal diagnosis to surgery or other medical intervention to postnatal follow-up care — all in one location.

The unit will open in stages over the next three weeks with deliveries expected to begin on or after June 9.

“Nobody else has this kind of dedicated space for the delivery of babies with birth defects,” said Dr. Lori Howell, executive director of Center for Fetal Diagnosis and Treatment at CHOP.

From the Chronicle of Higher Education (subscription required), an article by Lila Guterman about prenatal screening for thalassemia on the island of Cyprus.

Cyprus has a high rate of thalassemia, an inherited blood disease, and people there are required to get tested before marriage to find out whether they carry the gene. Prenatal genetic screening is voluntary, but the state pays for abortions when thalassemia is diagnosed.

Even though the Greek Orthodox Church in Cyprus views abortion as a sin, it seems most people are taking that path. Without the screening program, approximately 70 babies would be born with thalassemia each year — one in every 158 births on the island. But no more than one or two such babies have been born in any year since the mid-1980s.

Ruth Schwartz Cowan, a professor of the history and sociology of science at the University of Pennsylvania, has worked to document how and why Cypriots came to adopt and support the screening program. (Earlier post here.) After dozens of interviews on both sides of the island, she came to realize that people in every sector of society had strong reasons to consider the program ethical.

Some Western Europeans and Americans, however, have voiced doubts. They wonder whether reducing the number of people born with the disease will undermine medical care for existing patients. Others worry that the program sits on a slippery slope leading to screening programs for less-deadly diseases.

But the success on Cyprus proves those concerns are hollow, contends Ms. Cowan.

From the Chronicle of Higher Education (subscription required):

Author Ruth Schwartz Cowan defends prenatal genetic screening against claims of eugenics, rejecting claims by disability activists that it is a form of discrimination against people with disabilities. She says academics and journalists should stop making good people feel unnecessarily guilty about prenatal genetic screening.

Genetic screening was developed by medical geneticists to help the genetically “unfit,” precisely the people the eugenicists would have sterilized, have as many children as they wanted.

… Disability activists claim that genetic screening is a form of discrimination against the disabled — but it seems unlikely that the parents who banded together to form associations like the National Tay-Sachs Disease Association or the Cyprus AntiAnaemic Society or the National Association of Retarded Citizens would agree. (more…)

From the New York Times:

Michael Winerip tracks the emotional, ethical and scientific journey of a New York-area woman as she wrestles with the question of whether to have another child.

Michael Winerip first wrote about Jordana Holavach for the New York Times Magazine in 1998, when he documented her efforts with then-husband Richard Sontag to push for so-called “gene therapy” for their son. Jacob, now 12, has a rare genetic neurological disorder called Canavan disease, which was not cured by the experimental procedure his parents succeeded in arranging for him. He requires constant care, uses a wheelchair and is not able to speak.

Winerip’s 1998 article noted that the pair also filed a “wrongful birth” lawsuit against doctors she had used while pregnant with Jacob, claiming that she would have had an abortion had she known about his condition. Jordana and Richard divorced shortly after the story appeared

In this piece, Ms. Holavach is deciding whether to have a child with Gareth Holavach, whom she married after her divorce from Mr. Sontag. For years Ms. Holavach was fearful of tempting fate by conceiving a second time, and worried that having another child would be a selfish distraction and a betrayal of Jacob. Recently, after undergoing extensive prenatal screening and testing, she delivered a baby girl who does not share the disease.

“Gareth said, ‘What if it’s Down syndrome?’ ” she recalls. “I said, ‘I’d abort.’ He said, ‘Why would you do that?’ He’d seen Down syndrome children who’d functioned well. I said there are no guarantees. I’d seen DS kids who spent their lives in and out of hospitals.”

Mr. Holovach didn’t push it, but said if they had found Down syndrome, he would have opposed an abortion.

It didn’t come to that. All the tests came back normal.

There are some obvious omissions here:

• Winerip doesn’t attempt to document the apparent failure of the gene therapy effort that was the focus of his earlier article;
• He doesn’t disclose the outcome of the wrongful birth lawsuit;
• He doesn’t mention that Jacob’s father, Richard Sontag, is the brother of New York Times reporter Deborah Sontag; and
• He doesn’t question Ms. Holavach’s misrepresentation of people with Down syndrome as spending their lives “in and out of hospitals”.

And then there’s the stigmatizing phrase “confined to a wheelchair,” used in both the story and the slideshow. How difficult would it have been for the New York Times to use stereotype-free language?

Columnist Michael Gerson, writing in the Washington Post, argues that liberals who pledge an unswerving support for ’scientific integrity’ are eroding the core American principle that all men are created equal. Gerson joins Yuval Levin, writing in the New Atlantis, pointing to the eugenic practices of the late 19th and early 20th centuries as evidence of the moral pitfalls of purely scientific reasoning.

Nazism largely discredited the old eugenics. But a new eugenics — the eugenics of genetic screening and abortion, the eugenics of genetic selection in the process of in vitro fertilization — is alive and well.

Its advocates contend that the new eugenics is superior because it is voluntary instead of compulsory, and unrelated to race. But Levin responds: “Surely the most essential problem with the eugenics movement was not coercion or collectivism. . . . The deepest and most significant contention of the progressive eugenicists — the one that made all the others possible — was that science had shown the principle of human equality to be unfounded, a view that then allowed them to use the authority of science to undermine our egalitarianism and our regard for the weakest members of our society.”

From Catholic Online:

ANCHORAGE, Alaska — Local Catholic leaders and advocates for the disabled praised Gov. Sarah Palin and her husband, Todd, for fully embracing the arrival of their fifth child, who was born with Down syndrome April 18.

In a statement, the Palin family said they knew, through early testing, that Trig Paxon Van Palin “would face special challenges.”

Despite Trig’s disability, the Palins said they felt “privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.”

(more…)

From the Associated Press:

Alaska governor Sarah Palin says she was initially “shocked” upon getting the prenatal diagnosis of Down syndrome for her fifth child when she was four months pregnant. But she and her husband Todd (with baby Trig, left) never considered terminating the pregnancy

Once her husband got the news, he told her: “We shouldn’t be asking, ‘Why us?’ We should be saying, ‘Well, why not us?’”

… “We’ve both been very vocal about being pro-life,” Palin said. “We understand that every innocent life has wonderful potential.”

… “I’m looking at him right now, and I see perfection,” Palin said. “Yeah, he has an extra chromosome. I keep thinking, in our world, what is normal and what is perfect?”

Trig Paxon Van Palin was born on April 18, and Palin went back to work three days later. Her implicit message: that a child with special needs would not hinder her professional commitments.

“There is no reason to believe a woman can’t do it with a growing family,” she said. “My baby will not be at all or in any sense neglected.”