Genetic Therapy Inc. unless your written approval has been 
obtained. 
2. This clinical procedure has attracted a great deal of attention 
from the media. We will make every effort to protect the 
confidentiality of your child and your family. However, because 
of this media interest there is a greater risk than usual that 
information concerning your child's treatment will appear publicly 
without your consent. 
3. You are free to withdraw your consent for your child to participate 
in this study and seek care from any physician at any time. This 
will involve no loss of benefits and will not jeopardize your 
child's care in any way. 
4. There is no financial compensation for participation in this study. 
Payment for the costs of your child's participation in this study 
will be sought from entities involved in this research study or 
your third party payer (s). 
5. For answers to questions or should any problem arise regarding this 
research protocol, you should contact one of the following 
investigators . 
Corey Raffel, M.D., Ph.D. (Co-Principal Investigator) 
Stuart Siegel, M.D. (Associate Investigator) 
6. We suggest you retain a copy of this document for future reference 
and personal records. 
PHYSICAL INJURY 
The possible risks associated with this study plan have been 
presented. There is always the possibility that physical injury may 
occur. The Childrens Hospital of Los Angeles maintains professional 
liability insurance to protect patients from financial losses resulting 
from physical injury caused through the fault of the hospital, its 
employees or its agents. If physical injury occurs in the absence of 
such fault, the hospital does not provide reimbursement for treatment 
expenses or other compensation for physical injury suffered as a result 
of your child's participation in this study. 
If you believe that physical injury has been suffered as a result 
of participation in this study, you should contact Dr. Corey Raffel at 
(213) 669-2169, or Dr. Stuart Siegel at (213) 669-2205. Treatment for 
such injury will be available under the same financial arrangement as 
treatment is usually provided. 
CONFIDENTIALITY 
Case histories, the results of treatment, laboratory and pathologic 
data, photographs and X-rays may be published for scientific purposes, 
but neither your child's nor your identity will be disclosed and 
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