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 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.”

Host Ira Glass enters Michael Phillips’ life, provides catalyst for transformation

Eric Deggans, writing in the St. Petersburg Times, documents the unlikely partnership between This American Life’s Ira Glass and Michael Phillips, a 27-year-old with a genetic muscle disease that has left him with the ability to move only his face and his thumb. Their collaboration became the story that kicked off TAL’s second television season last weekend.

Glass had heard about Phillips through one of his producers, and was

… drawn in first by his matter-of-fact recounting of how often he nearly dies when there is a problem with his respirator.

“The way he wrote about what those moments were like was utterly without melodrama,” said the host, who was intent on avoiding a typical, corny story about overcoming a disability. “It was just a very easy reporting of, ‘Here’s everything that goes through my head when I realize I may die in a minute.’ It was kind of amazing.”

After the exchange of many email messages, Phillips realized he wanted more independence from his mother, who still sleeps each night at his bedside so that she can respond if his breathing tube pops out.

Another goal was to spend more private time with his girlfriend Sara Rosenbaum (above, with Phillips), a St. Petersburg Times reporter whom he met through an online ad.

“There was no space in his life for me,” [Rosenbaum] said. “As he started writing Ira, he began to change; he realized what he wanted in his life . . . (and) after Ira left, I began to realize how much I cared for Mike after all.”

An excerpt of the show can be seen on the Showtime site here. Actor Johnny Depp provides the voice for Phillips’ emails.

From the International Herald Tribune, Scientific American, elsewhere:

Companies would no longer be able to use genetic information like a person’s predisposition for breast cancer, sickle cell or diabetes to make insurance or job decisions under a bill passed by Congress on Thursday.

The House voted 414-1 for the legislation a week after it passed the Senate on a 95-0 vote. The bill would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

Rep. Ron Paul, R-Texas, was the only member of Congress to vote against the bill. President Bush is expected to sign it into law.

Related op-ed by Russell Korobkin, writing in the Los Angeles Times: Ban on genetic discrimination is laudable, but doesn’t go far enough

Earlier post here.

From the Baltimore Sun:

Legislation barring employers and insurers from discriminating against Americans on the basis of genetic information won Senate approval 95-0 today, paving the way for passage of a law that supporters say will help usher in a new era of medicine.

The measure will go back to the House, which is expected to pass it. President Bush has indicated support.

“I’m absolutely over the moon,” said Dr. Francis S. Collins, director of the National Human Genome Research Institute, whose genetics research has been stymied by the refusal of one-third of potential test subjects to participate for fear of the consequences.

… Democratic Sen. Edward M. Kennedy of Massachusetts called it the “first civil rights bill of the new century.”

Earlier posts here and here and here.