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.

From the (UK) Sunday Times:

Doctors in Essex have accepted the request of a mother to perform a hysterectomy on her 15-year-old daughter, and have requested legal approval to carry out the controversial surgery.

Alison Thorpe has requested the surgery for her daughter Katie, who has cerebral palsy.

Thorpe, 45, believes that for Katie the physical changes that accompany adolescence will bring only distress, with none of the rewards other girls can expect from growing up.

Knowing she has no prospect of having a child, Thorpe has asked surgeons to remove her daughter’s womb, sparing her the discomfort and inconvenience of menstruation.

… “Katie has an undignified enough life without the added indignity of menstruation,” Thorpe said.

Thorpe’s request for surgery mirrors the case of a nine-year-old American girl known as “Ashley X” or “Pillow Angel,” whose uterus and breast buds were removed at the request of her parents. Disability advocates maintained that the surgery was inhumane, and argued for more support for people with disabilities and their families.

Other versions of the story are here and here.

Another step down the slippery slope of embryo screening

Slate’s William Saletan discovers the reports we noted the other day about the British couple screening embryos to eliminate the possibility of a child with early onset Alzheimer’s. His take on the March of Progress:

1) So, now we’re snuffing embryos that would live normally to 49.

2) And we’re snuffing embryos that might never get the disease.

3) You’re promising us an imminent Alzheimer’s cure from stem cells—but you’re tossing embryos on the theory that they’re doomed to Alzheimer’s 50 years from now?

Donation groups say they walk a fine line, but critics see potential for abuses

From the Washington Post, a feature about the tensions that surround practices for obtaining organs for transplant. At the center of the controversy is the legal case surrounding the death in San Luis Obispo, CA, of Ruben Navarro, a man with a chronic degenerative disease. After nurses raised complaints, prosecutors charged a transplant surgeon with trying to hasten Navarro’s death in order to harvest his organs.

For some doctors, nurses and medical ethicists, the case represents their worst fear. Said one critical care specialist:

“If you promote organ donation too much, people lose sight that it’s a dying patient there. It’s not just a source of organs. It’s a person.”

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