Comments on: ‘Newborn Screening Saves Lives Act of 2007’ http://www.kudos2fly.com/2009/08/05/%e2%80%98newborn-screening-saves-lives-act-of-2007%e2%80%99/ My interests, life and travel blog Thu, 08 Jul 2010 12:37:02 -0400 http://wordpress.org/?v=2.8 hourly 1 By: admin http://www.kudos2fly.com/2009/08/05/%e2%80%98newborn-screening-saves-lives-act-of-2007%e2%80%99/comment-page-1/#comment-205 admin Mon, 24 Aug 2009 12:10:38 +0000 http://www.kudos2fly.com/?p=416#comment-205 I don't think it has been repealed. The problem with this OPTION to save lives ist's a government run program. If a person chooses to screen their child it should only be the decision of the Dr. and Parents not the government. Sad its not been repealed as far as I know. I don’t think it has been repealed. The problem with this OPTION to save lives ist’s a government run program. If a person chooses to screen their child it should only be the decision of the Dr. and Parents not the government. Sad its not been repealed as far as I know.

]]> By: K. B. http://www.kudos2fly.com/2009/08/05/%e2%80%98newborn-screening-saves-lives-act-of-2007%e2%80%99/comment-page-1/#comment-204 K. B. Mon, 24 Aug 2009 04:32:06 +0000 http://www.kudos2fly.com/?p=416#comment-204 Are there any updates regarding organized efforts to repeal the Newborn Screening Act? I don't have an issue with an OPTION of screening, and in fact, think that it is a fantastic OPTION that has the potential to save lives. However, I must protest, and with vigor, that this Act does not make such screening optional. There are NO consent requirements for testing under this Act. Further, and just as horrific, are the results are not the sole and private property of the parent/child. Once gathered, the DNA information can be used without further knowledge... and for unknown purposes. Currently, there are not significant protections in place to prohibit future discrimination based on the DNA information of individuals. Until such protections are in place, such information should be carefully guarded and gathered only after the informed consent of parents. Respectfully, K.B. Are there any updates regarding organized efforts to repeal the Newborn Screening Act?

I don’t have an issue with an OPTION of screening, and in fact, think that it is a fantastic OPTION that has the potential to save lives.

However, I must protest, and with vigor, that this Act does not make such screening optional. There are NO consent requirements for testing under this Act. Further, and just as horrific, are the results are not the sole and private property of the parent/child. Once gathered, the DNA information can be used without further knowledge… and for unknown purposes.

Currently, there are not significant protections in place to prohibit future discrimination based on the DNA information of individuals. Until such protections are in place, such information should be carefully guarded and gathered only after the informed consent of parents.

Respectfully,
K.B.

]]> By: Beverly Fromal http://www.kudos2fly.com/2009/08/05/%e2%80%98newborn-screening-saves-lives-act-of-2007%e2%80%99/comment-page-1/#comment-201 Beverly Fromal Sat, 08 Aug 2009 08:54:52 +0000 http://www.kudos2fly.com/?p=416#comment-201 I am Kimberly's mother. I just happened onto this site, by accident. When I saw the history channel about two weeks ago. At first I thought it sounded great. Being a recent kidney transplant patient. I first thought the idea was great. Growing transplant organs from ones own DNA would lessen the chances of rejection. Until I looked into the bill. The statement that got me. Was without permission or consent of the parent. Hospitals do not even have to inform parents. But this is what Germany did before they start to kill off people. What else can this bill do? What will it lead too? What will this information be used for? And as I understand it. Will be extended to include every US citizen in the United States. Also, why are they collecting my DNA without my consent? I for one, planned to work at repealing this bill. As every US citizen should. Is the fantasy of 1984 here? What next chip implanted in our bodies without our consent. Will there be a program to track us where ever we go? WHat a scary thought? I am Kimberly’s mother. I just happened onto this site, by accident. When I saw the history channel about two weeks ago. At first I thought it sounded great. Being a recent kidney transplant patient. I first thought the idea was great. Growing transplant organs from ones own DNA would lessen the chances of rejection. Until I looked into the bill. The statement that got me. Was without permission or consent of the parent. Hospitals do not even have to inform parents. But this is what Germany did before they start to kill off people. What else can this bill do? What will it lead too? What will this information be used for? And as I understand it. Will be extended to include every US citizen in the United States. Also, why are they collecting my DNA without my consent? I for one, planned to work at repealing this bill. As every US citizen should. Is the fantasy of 1984 here? What next chip implanted in our bodies without our consent. Will there be a program to track us where ever we go? WHat a scary thought?

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