Thursday, January 1, 2009

Genetic Testing - Conceal Information II /Yes

Robert Burk (professor of genetics) - response to attack on Dor Yeshorim [see original posting]

Jewish Week

The article adorning the front page of the 26 December Jewish Week, “Group Charged with ‘Playing God’ Over Genetic Testing” presents a biased representation of Rabbi Eckstein, Dor Yeshorim, medical facts and community sensitivites. In addition, the article also overlooks potential financial conflicts of interest as discussed below. Replacement of the enzyme defective in cases of severe Gaucher disease is a “medical miracle”; nevertheless, there are many complexities to carrier screening, diagnosis and treatment of the wide spectrum of mutations and diseases collectively grouped together.

The article personally attacks Rabbi Eckstein as “dissuading people from testing for Gaucher’s so not to discourage young men and women who may be carriers from marrying each other”. Let’s be clear, from the medical literature there is equipoise on whether genetic testing for Gaucher disease does more harm than good as pointed out in a recent editorial by Dr. Ernest Beutler in JAMA (volume 298:1329-31, 2007). In fact he states that, “the Israeli Medical Geneticists’ Association has recommended against Gaucher disease screening”. [...]

1 comment :

  1. WADR to Dr. Beutlers memory,

    Dr. Beautler was very wrong many times throughout his career and one of those times was with regard to our family. We consulted with Dr. Beutler years ago regarding a Jewish genetic disorder.

    Dr. Beutler advised "not to go so crazy" (avoiding contraindicated proteins and other substances which are problematic),"don't turn your life upside down, it won't make that much of a difference".

    A second opinion said the opposite.

    While Dr. Beutler believed that rigorous treatment would not make a difference, the case was hopeless, the second doctor said to the contrary and she was 100% right B"H and there was a complete recovery.

    So when Dr. Beutler says “You can’t give the parents the information they need to make an informed decision" and “It creates more problems than it solves”,we have been on the other side of that consulting desk and found this to be poor advice.


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