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It is ethically correct to study XXY boys without giving them therapy?

Posted , 2 users are following.

XXYGuy
XXYGuy

What happened to my original question? If the moderator doesn't like the link he can always delete it and edit the end of my question.

Usually it is not ethically correct to find people with disease then refuse to treat them, so why would a survey that is currently being advertised (somewhere) for participants, be ethically correct when half the affected individuals will be given a placebo, but told they're taking testosterone?

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The purpose of this study is to determine if testosterone replacement therapy leads to changes in psychological factors and/or motor skills in adolescent males with 47,XXY This study will also evaluate whether certain genetic factors of the X chromosome affect the psychological or motor features of XXY/Klinefelter syndrome.

The study will follow half the boys who'll be given testosterone by gel, and the other half a placebo gel, for 12 months.

There are no plans stated to evaluate the intelligence or social adaptation of the parents of these boys. The full description of the study can found here:

http://www.clinicaltrials.gov/ct2/show/NCT01585831?term=testosterone+klinefelter+denver&rank=1&utm_source=Research+Announcement+4%2F29%2F14&utm_campaign=Research-4-29-14&utm_medium=email

Patient Moderator Comment: I have reinstated the information and URL (a link) referring to the study into your new discussion.

0 likes, 5 replies

5 Replies

  • XXYGuy
    XXYGuy

    Posted

    Even though this study is to last only 1 year, it presupposes that the parents are all excellent at their job, who know exactly how to deal with their sons.  However work done previously by Dr Johannes Neilsen in Denmark shows conclusively that parents with poor socialising skills, or with chronic disease themselves, or who are drug addicts, end up rasising XXY boys who fare much more poorly than siblings.  Suggesting to me that how XXY boys are treated by their teachers and parents plays a much greater role in our development than testosterone.

    Thank you Moderator for including the link to the survey, that I at least have questions regarding its worth. 

  • SunRisen
    SunRisen XXYGuy

    Posted

    Basically the concept of having a placebo is to offset the likelihood of false indicators. Though as far as I am aware in all previous tests involving testosterone placebo's have not given false indicators so it has probably been included as a "belt and braces" procedure.
    • XXYGuy
      XXYGuy SunRisen

      Posted

      I now know of 2 men in New Zealand who were diagnosed as infertile, but nobody bothered to tell them why, they both turned out to be sufferinhg from Klinefelters' syndrome and did not receive therapy until after they did their own investigations.  This is a bad trend.  

      This particular survey wants to study the effects of persons known to be suffering from disease by not treating them, I see no difference, both situations are unethical.

      I wrote to thew author oif the study, but she's notg bothered to reply, maybe she's too busy to reply?  Whatever the reason, I wonder how she would like being diagnoised with a disease but not treated just to see how badly or well she got on?  

      Children in US America don't seem to enjoy even the most basic of rights.  If their parents and doctors don't think they should be treated for a disease, they won't be.

    • XXYGuy
      XXYGuy SunRisen

      Posted

      And my 16 year old daughter just read my comments here, and even without discussing them with her she agrees, it is unethical to find XXY boys and not treat them.

      Yes my daughter does know I'm XXY and all that entails.  She knows she is not genetically related to me.  Still, I do say, families are by relationships not genetics. 

       

  • SunRisen
    SunRisen XXYGuy

    Posted

    Studies tend to involve parameters which may be more favourably structured in order to obtain any necessary funding in the first place. This is generally why studies of a particular nature can seem inexplicable and rather nonsensical when examined for what they appear to be. Ethics and studies into the if, but, and maybe aspects of any particular study tend to be ignored simply because if they were accepted then the studies would be less likely to take place.
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