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July 25, 2004

PC suppresses speech, ideas and now genetic choice

Imagine going throught he process of genetic screening in preparation for an IVF procedure and a test for deafness is purposely withheld from your because the advocates for the deaf hold the position that deafness is not a disability.

Meet Karen Coveler the mother of a newly born deaf child and a doctoral candidate in genetics at the time of her pregnancy.

Harry Ostrer, director of the human genetics program at New York University Medical Center, suggested in a scientific journal article six years ago that a routine screening test for the gene might be appropriate - particularly for Ashkenazi Jews, because 80 percent to 90 percent of inherited deafness in their children is caused by mutations in the gene. But Dr. Ostrer said that almost no one offered it, including the genetic counselors he supervises, because of opposition from advocates for the deaf who argued that deafness was not a disease.

"If people ask us, 'What about that deaf test I heard about?' we will tell them about it,'' Dr. Ostrer said, "But we aren't more proactive about it because of the sensitivities of the deaf community.''

[ . . . . . ]

But the group, to which most obstetricians look for guidance on genetics, does not recommend routine screening for Fragile X, the most common inherited form of mental retardation, even though the number of couples at risk of having a child with Fragile X is almost double the number of those at risk of having one with cystic fibrosis. But the Fragile X test is typically only offered to women who know of a relative with mental retardation.

[ . . . . . ]

But Dr. Ronald Librizzi, chief of maternal fetal medicine at Virtua Health, a chain of hospitals in New Jersey, says that merely offering a test can exert pressure on a couple to consider an abortion. When Dr. Librizzi polled the obstetricians under his supervision about whether they should offer Fragile X screening, the majority told him, "We don't need another thing to scare our patients with," he said.

Dr. Librizzi's network is one of several that has declined to offer routine Fragile X screening. He also said he wished that the obstetricians' association had not recommended that all patients be told about the cystic fibrosis test.

So here, just like the German legislators I blogged about a few days ago, we have physicians purposely setting themselves up as knowing what's best for their patients despite the fact that the patients are most likely self-selecting and voluntarily subjecting themselves to genetic tests in order to lessen the chance of passing dibilitating conditions onto their new-born children. The doctor's conscience is assuaged and the parents, and the child, have to live with an avoidable medical condition.

Is there no limit to this type of paternalism? Is the nanny-state mentality so ingrained that it is impossible for such people to concieve of patients and citizens making informed decisions that are appropriate for their life's circumstances and goals?

Posted by TangoMan at 06:00 PM