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How is refusing therapy for children Ethical?

Posted , 2 users are following.

XXYGuy
XXYGuy

AXYS formerly the KS&A (Klinefelter Syndrome & Associates) is promoting a study of XXY boys in puberty, between the ages of 10 and 15 years, where half the participants will be given a placebo and the other half a Testosterone Gel.  The study is paid for by the NIH (National Institutes of Health) and has apparently passed all ethical considerations.  

My first concern is that parents can't give informed consent for their children. It is not the parents bodies that may be inadvertently affected if something goes wrong.

Over the years I have been involved with searching for information about XXY and  Klinefelters' syndrome, this type of study was always described as being unethical, and cannot be performed.  It is unethical to discover people who need therapy and not give it, just to see what happens.  It is also unethical to give therapy to people who don't have a clinical need, yet in this study both scenarios may well take place, as I cannot find anything in the published Protocol to prevent them from taking place.

You can read the Protocol by searching for "Study of Psychological and Motor Effects of Testosterone in Adolescents With XXY/Klinefelter Syndrome (TestoXXY/KS)"  

 

0 likes, 3 replies

3 Replies

  • iyke32288
    iyke32288 XXYGuy

    Posted

    I was recently diagnosed at age 30, just few days ago. Suffered with KS all my life without knowing. Was diagnosed with Type 1 diabetes in 2007 probably due to low T. Always had muscle aches in my upper arms and big gynecomastia. Am actually scared of going on Testosterone treatment because I feel it may reduce my chances of a successful Micro-TESE/ICSI in the future. What do you think?
    • XXYGuy
      XXYGuy iyke32288

      Posted

      I did enter content and NOTHING came out but a comment "you must enter some content!"
    • XXYGuy
      XXYGuy

      Posted

      From memeory I typed "Happy birthday iyke"   

      I'll send my next responses by private message until the system can be guaranteed to work!

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