05/07/2004 06:40 PM House JUD

SB 217 - GENETIC PRIVACY                                                                                                      
                                                                                                                                
Number 1520                                                                                                                     
                                                                                                                                
CHAIR McGUIRE indicated that the  next order of business would be                                                               
CS  FOR SENATE  BILL NO.  217(JUD), "An  Act relating  to genetic                                                               
privacy."                                                                                                                       
                                                                                                                                
Number 1539                                                                                                                     
                                                                                                                                
SENATOR DONNY OLSON, Alaska State  Legislator, sponsor, by way of                                                               
presenting SB  217, surmised that  everyone is familiar  with how                                                               
useful DNA  (deoxyribonucleic acid)  identification has  been for                                                               
law enforcement and in paternity  disputes.  He remarked, though,                                                               
that  he  is  very  concerned   about  genetic  privacy  because,                                                               
currently, state laws restrict access  to medical records but not                                                               
to genetic information;  SB 217 seeks to  curtail exploitation of                                                               
valuable  genetic information.    Although there  are no  federal                                                               
statutes regarding  genetic privacy,  15 states  require informed                                                               
consent before a third party  performs or requires a genetic test                                                               
or obtains  genetic information,  and 23 states  require informed                                                               
consent before  disclosing genetic  information.   In conclusion,                                                               
he   said  that   SB  217   gives   consideration  to   advancing                                                               
biotechnology  in DNA  analysis  while also  giving Alaskans  the                                                               
right to keep their genetic information private.                                                                                
                                                                                                                                
REPRESENTATIVE  SAMUELS asked  Senator Olson  whether there  were                                                               
any possible  exceptions that he  considered but did  not include                                                               
in the bill.                                                                                                                    
                                                                                                                                
SENATOR OLSON  indicated that there weren't,  and highlighted the                                                               
exceptions currently  listed in the bill.   He noted that  SB 217                                                               
requires   informed   consent   before   someone   can   collect,                                                               
distribute, or use a person's genetic information.                                                                              
                                                                                                                                
REPRESENTATIVE  OGG asked  whether  SB 217  prevents  the use  of                                                               
samples collected from public places such as bathrooms.                                                                         
                                                                                                                                
SENATOR OLSON reiterated  that under the bill, unless  one of the                                                               
listed exceptions  applies, informed  consent is  required before                                                               
someone  can  collect,  distribute,  or use  a  person's  genetic                                                               
information.                                                                                                                    
                                                                                                                                
Number 1862                                                                                                                     
                                                                                                                                
REPRESENTATIVE  GARA asked  under what  circumstances, currently,                                                               
might someone unknowingly have his/her DNA taken.                                                                               
                                                                                                                                
SENATOR OLSON ventured that such  might occur when a person gives                                                               
a blood sample or a semen sample.                                                                                               
                                                                                                                                
REPRESENTATIVE GARA  said he would  not want  someone to go  to a                                                               
private medical clinic, for example,  sign several large, complex                                                               
release forms without  knowing that one of the  forms includes an                                                               
informed  consent  release  pertaining  to  the  use  of  genetic                                                               
information.   He  suggested  that  perhaps future  consideration                                                               
might  be given  to requiring  that an  informed consent  release                                                               
regarding  genetic  information be  provided  for  in a  separate                                                               
document.                                                                                                                       
                                                                                                                                
SENATOR OLSON  said he  has given  that issue  consideration, and                                                               
noted that  page 2,  line 14,  states:  "A  person may  revoke or                                                               
amend their informed and written consent at any time".                                                                          
                                                                                                                                
The committee took an at-ease from 7:20 p.m. to 7:21 p.m.                                                                       
                                                                                                                                
REPRESENTATIVE OGG  complimented Senator Olson on  a well-crafted                                                               
bill.                                                                                                                           
                                                                                                                                
REPRESENTATIVE GARA concurred.                                                                                                  
                                                                                                                                
CHAIR McGUIRE  indicated that SB 217  would be held over  for the                                                               
purpose  of considering  a proposed  amendment  submitted by  the                                                               
insurance industry.