From the Tri-City (Washington) Herald:

A bill making its way through Congress brings a rare chance for both sides of the abortion debate to come together in a humane way.

The bill, backed by Sens. Sam Brownback, R-Kan., and Ted Kennedy, D-Mass., would create a national registry for families willing to adopt babies born with Down syndrome, spina bifida, cystic fibrosis or dwarfism. It would cost about $5 million.

… this is an effort well worth the time and money it will take to set it up.

… A national registry would give pregnant women who might not carry their babies to term another option: A warm and accepting home with parents who are willing to accept the extra responsibilities such children represent.

By Emily Bazelon in O the Oprah magazine:

(Newstands only; article not available on the magazine’s website.)

After her son was diagnosed with Asperger’s syndrome, Gwenyth Jackaway went on the Internet in search of other women who had used the same anonymous sperm donor. She has found seven other mothers. Among them they have eleven children and one on the way. Three have diagnoses on the autism spectrum, a rate that is about 45 times higher than the chances for the general population. Bazelon spends time with the women and documents their lives.

Is the bank that sold Donor X’s sperm at fault for failing to catch the genetic defect he appears to carry? (None of the mothers of affected children has family members with autism.) No history of the disorder showed up on the three-generation medical profile that Donor X filled out for the California Cryobank. The bank conducts DNA testing for conditions like Tay-Sachs, cystic fibrosis and sickle-cell anemia, which are primarily caused by a single mutant gene.

Autism is a different story. The disorder clearly has a hereditary component (if one identical twin has it, the odds the other will, too, are between 60 and 90 percent), “but there is not a genetic test for autism because we have not yet identified enough genes that might cause it,” says Peter Szatmari, MD, a veteran autism researcher and psychiatry professor at McMaster University in Hamilton, Ontario.

Writing in the New York Times’ Modern Love column, Kayla Rachlin Small describes the joy and anguish she felt while pursuing an intimate relationship with a man who has cystic fibrosis, a condition she shares. An excerpt:

I didn’t throw myself at Thomas in hopes of unconditional acceptance; I did it out of defiance. There was the expectation that we would choose safety over intimacy. There was the probability that had we [been] born a few years earlier, neither of us would have grown old enough to have sex. And then the ultimate snub: the possibility of reproduction.

There we were, manifestations of what people fear for their babies. If we were to conceive, our child would without question have cystic fibrosis. At times, my ambivalence about such an outcome was overcome by my longing for that baby. I wanted to provoke whispers of “How tragic” and “They should have known better” – then prove those judgments wrong.

I envisioned our child, head held proudly, endowed with a sense of O.K.-ness that our own parents hadn’t been able to give us. The three of us were all right, disease included.

So when Thomas climbed off my bed and reached for the packet in his coat pocket, I told him no, we didn’t need that.

From the [UK] Sun:

Doting dad David Cameron was seen for the first time by voters last night playing with his disabled son.

The Tory leader was filmed feeding Ivan, five – who has a rare form of cerebral palsy.

A TV crew was allowed in as the family had breakfast at home. Mr Cameron’s daughter Nancy, four, and son Arthur, two, sat on either side of him.

He admitted the move would spark accusations he was exploiting his kids for political gain. But he insisted he was a family man with nothing to hide.

Ivan’s condition became known days after he was born – and he needs 24-hour care.

… Prime Minister Gordon Brown has rarely been seen with his own children John, four, and Fraser, 20 months – who suffers from cystic fibrosis. He and wife Sarah have decided never to talk about his condition.

Connecting the dots: Both the British prime minister and the leader of the opposition have children with disabilities. Gordon Brown’s son has cystic fibrosis; Cameron’s son has cerebral palsy.

Related story in the [UK] Daily Mail: David Cameron defends decision to invite TV cameras into his home

From the [Newark] Star-Ledger:

The number of babies born with cystic fibrosis declined by half in Massachusetts after genetic screening started to identify carriers of the gene, suggesting similar declines may be happening across the nation, according to a recent report in the New England Journal of Medicine.

Genetic screening for CF presents unique ethical questions, particularly since many people with the disease live into adulthood. In the 1960s, life expectancy for people with CF was less than ten years, but advances in treatment have extended the mean life expectancy to 37 years. Prospects for children born today are better still.

Researchers say they cannot definitively explain the decline. Among the possibilities:

• – Couples who learn both carry the CF gene may decide not to have children, may turn to donor sperm or eggs or may use IVF so they can test embryos before implanting them; or
• – Pregnant women who learn they are CF carriers may test the fetus and have abortions if the test is positive.

The Cystic Fibrosis Foundation has called genetic testing a personal matter and says it is too early to know whether the Massachusetts decline is being duplicated in other parts of the country.

The headline on a story by Rob Hotakainen in the Wichita Eagle describes the Prenatally and Postnally Diagnosed Conditions Awareness Act as an “abortion bill.” The measure, co-sponsored by Sens. Sam Brownback (R-Kansas), at left, and Edward Kennedy (D-Massachusetts), would provide for accurate medical information to be offered to parents who receive a diagnosis of a disability either before birth or up to a year after the birth of a child.

Hotakainen describes the bill as one that “aims to reduce the number of abortions tied to genetic disorders.” He says Brownback views the bill as part of his campaign for “the culture of life,” and describes Brownback as saying that “children with special needs are viewed as being specially touched by God” in some cultures. Kennedy’s office declined to comment on the legislation, which passed a Senate committee recently. An excerpt:

“We’re just saying, instead of killing the children, let them live,” Brownback said … Currently, Brownback said, 90 percent of pregnancies are aborted when a genetic test shows that a fetus will develop into a child with Down syndrome, spina bifida, cystic fibrosis or dwarfism.

… “I’d like to see it come way down,” Brownback said. “I think these children are beautiful and sacred children, and they should be allowed the chance to live.”

(more…)

Children could be screened for genetic diseases, but parents should let them decide later. Why? Early detection doesn’t mean a cure, and there could be psychological risks.

Writing in the Los Angeles Times, Dr. Valerie Ulene makes the point that not all genetic information is beneficial and some can be toxic. More often than not, she says, testing for a genetic abnormality brings only anguish, as parents and children are given information that will not help them prevent a disease or delay its onset.

… parents must realize that detection doesn’t necessarily lead to a cure. Currently, our ability to treat genetic diseases lags well behind our ability to identify the genetic changes that cause them.