15. Voluntary nature of participation 
Your participation in this project is voluntary. You may refuse to participate in or 
withdraw from the study at any time without penalty or loss of benefits to which you may 
otherwise be entitled. In case you decide to withdraw from the study, you may suffer the 
following consequences: 1 ) Loss of the ability to monitor for side effects of gene therapy. 
2) Failure to find out if there are any unforeseen risks from gene therapy that may not be 
obvious without repeated evaluation. You are therefore strongly urged to continue in the 
study and withdrawing is inadvisable. 
1 6 . Documentation of the consent 
One copy of this document will be kept together with our research records on this study. A 
second copy will be placed in your hospital record. A third copy will be given to you to 
keep. 
17. Consent of the subject 
I have read the information given above. I understand the meaning of this information. 
Drs. Wilson and Simon have satisfactorily answered my questions concerning the study. I 
hereby consent to participate in the study. I will also have my next of kin sign a 
provisional consent to an autopsy to be used when I eventually die. 
1 8 . Names and signatures of consenting persons and witnesses 
Subject's Signature Date 
Witness' Signature Date 
1 9 . Date of consent 
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Recombinant DNA Research, Volume 16 
