Japanese OBs wary of new Down syndrome screening test

The Japaneses Obstetricians are taking excellent care of their patients; especially expectant women whose unborn child has a diagnosis of Down syndrome, when they urge caution after a diagnosis of Down syndrome is given.

Hoping to halt the rapid and widespread implementation of the new diagnostic method, developed in the United States, in domestic medical institutions, a study group of doctors has been launched to draw up guidelines for medical institutions wanting to introduce the method. Further, the Japan Society of Obstetrics and Gynecology (JSOG) has issued an emergency statement stressing the need for support systems that include genetic counseling.

Contrast this to the approach followed in the United States.

According to Fumio Takada, who is a qualified clinical geneticist and a professor at Kitasato University, when genetic counseling was given to pregnant women who had been considering abortion after learning their fetus had the chromosome abnormality that causes Down syndrome in an amniotic fluid check, some women decided against abortion after learning about the characteristics of Down syndrome and what support was available for affected children and their families.
"To help parents decide, it's important to provide objective counseling before and after the examination," Takada said.
In the United States, the decision to obtain a prenatal diagnosis is largely left up to the discretion of the parents, and the process is legally regulated.

It is up to the discretion of the OB whether the woman is sent to a genetic counselor, in 49 states. Only Massachusetts has a law requiring that up to date information such as that contained in the pamphlet created by Lettercase which is free as an ebook. Massachusetts governor Duvall Patrick recently signed a law requiring up to date information be given to parents whose unborn child is diagnosed with Down syndrome.

Such a bill was jointly sponsored by Democrats and Republicans, passed unanimously in October 2008 by both houses of Congress, but it is still awaiting funding from the HHS. It is a sad commentary that the ACOG does not offer obstetrical patients the same type of informed consent after a diagnosis of Down syndrome that Japanese OB's are organizing. Recent studies reveal a 99% rate of satisfaction among parents of children with Down syndrome, according to a study done by Dr Brian Skotko and published in the American Journal of Medical Genetics. 

 The timing of the new tests, where 99% accurate results are given as early as the 12th week of pregnancy with only a simple maternal blood test, offers patients an unprecedented opportunity to seek the latest information about Down syndrome including, the latest medical advances in treatment, research, and to familiarize themselves with the day to day realities of raising a child with Down syndrome which can be found at an ever growing community of parent bloggers.

Knowledge is power and certainly is the right of all patients facing a life changing decision. Hopefully the ACOG will follow the lead of the JSOG (Japan Society of Obstetrics and Gynecology ) and provide patients with informed consent.

Read more on Japanese OBs here.
http://www.yomiuri.co.jp/dy/national/T120908002687.htm