UNC Prof. Albert Harris recently told his biology class that older women should terminate pregnancies if Down syndrome is diagnosed.

Two op-eds from the Charlotte [North Carolina] News & Observer:

Out of touch on Down syndrome

Ellen Russell, who recently celebrated her 29-year-old daughter Emily’s marriage (photo at left), questions Prof. Harris’ assertion that a child with Down syndrome had “ruined” the lives of a family of his acquaintance. She says such a statement misses the lesson of the last thirty-plus years of advocacy by families of people with intellectual disabilities.

Perhaps that family could never access what it needed in the educational, social, day-care, employment or medical systems. Perhaps it didn’t have the encouragement of family, neighbors and friends. It is impossible for me to accept that it was the child who ruined their lives. I can give a hundred personal examples of families whose lives have flourished and benefited from the experience of having a child with Down syndrome.
(more…)

From Radio Netherlands Worldwide:

Pediatric neurosurgeons from 12 countries, writing in an article in the medical journal “Child’s Nervous System,” have expressed concern over the practice in the Netherlands of actively carrying out euthanasia on babies with spina bifida.

Speaking for the Dutch Pediatric Association, Edward Verhagan rejected the international criticism, arguing that treatment should not be given to infants unless there is some hope of improvement as a result of the treatment.

The current debate was touched off by Dutch pediatric neurosurgeon Rob de Jong, writing in the same journal. De Jong surveyed medical cases and found a number in which physicians dismissed patients as having no hope, only to find later that their initial diagnoses were incorrect. In one such case, a South African child with spina bifida was denied treatment, and years later was found to be alive and leading a “reasonably independent” life. “There is no reason whatsoever for active life-termination of these newborns,” he wrote. (more…)

From ABC News: the story of Katie Trebing, a little girl with a rare genetic disorder who needed a bone marrow transplant from a perfectly matched sibling to save her life.

Her parents Steve and Stacy used in vitro fertilization (IVF) to produce embryos, then screened the embryos through preimplantation genetic diagnosis (PGD). Katie was pronounced cured after receiving a bone marrow transplant from her brother Christopher. The experiences of the Trebing family were the basis of a series of articles in Newsday.

Grant from NIH allows for research across five schools

From the Daily Pennsylvanian (the student newspaper of the University of Pennsylvania):

The school of medicine at the University of Pennsylvania has received a $5.4 million grant from NIH to fund a new Center for Excellence in Ethical, Legal and Social Implications, one of two new centers that will examine questions surrounding genetic research.

The Center will focus on the implications of new genetic technologies, such as prenatal genetic testing. It represents an unusually collaborative effort involving five of Penn’s 12 schools.

Professors from the Annenberg School for Communication, the School of Arts and Sciences, the Wharton School, and the School of Nursing will also lend their expertise to the Center.

Med School professor Barbara Bernhardt is heading one project, for example, that explores how confident patients and doctors are in the effectiveness of a new genetic test … Other projects being headed by the center at Penn include a historical analysis of prenatal testing for cystic fibrosis and Down syndrome …

Support group president says screening could be a mistake

From the Halifax (Nova Scotia) Chronicle Herald:

Screening pregnant women for Down syndrome could be a mistake, says a Canadian advocate, because prospective parents are frequently receiving inadequate and biased information.

In an interview, Renata Lindeman of the Nova Scotia Down Syndrome Society said society should look for ways to support people with genetic differences. She raised concerns that screening techniques could expand to include other conditions, predicting that the situation would get “worse and worse.”

“Is this really the way we want to go, to eliminate all people with genetic differences?” Ms. Lindeman asked. “Where are we going to stop? The possibilities are huge.”

From National Public Radio’s Talk of the Nation:

Scientists at Stanford University say they’ve developed a blood test to that’s able to identify patients who are at risk for Alzheimer’s disease. So far, however, there is little medicine can do to treat the disease and no cure.

Neal Conen talked with Susan Davis, who has a family history of early onset Alzheimer’s. She said she would not want to take the test because it would not give her any information that could help guide her care.

A caller commented that she felt pressured by her obstetrician to have her pregnancy screened for Down syndrome. She was uncomfortable about the screening because she and her husband had decided they would not terminate the pregnancy. “I was kind of required to have the testing for Down syndrome,” she said. “We had the testing done kind of because my doctor said you have to because you’re old.”

An audio file of the show is available. Comments on the story are here.

When Edward Batha’s newborn daughter was diagnosed with Down syndrome, he thought it would spell a lifetime of suffering. But one year on, her resolute character and sunny nature has led him to rethink what it means to be a member of society.

From the (UK) Independent.

I find it wrong the way that such a child is portrayed in the whole [prenatal] process, as if you are going to give birth to a reject or a mongrel. In years not so distant from now, people will be able to learn what chance their children have of becoming alcoholic, depressed, epileptic and so on. Will these all become grounds for premature termination or will we be obliged to face the fact that we are all born different? And will Mia’s kind be given the respect they so richly deserve?

For myself, I have no doubt about the worth that Mia’s character can contribute to our world. Just by being her cheerful, stoic self, Mia has changed me. Now I know of no one whose hand I would be prouder to hold as we walk laughing down the street together.