Legislature(2003 - 2004)

02/25/2004 08:00 AM Senate JUD

Audio Topic
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
                        SB 217-GENETIC PRIVACY                                                                              
   SENATOR GENE THERRIAULT  moved to  adopt Version I  of SB  217 as                                                            
   the working document before the committee.                                                                                   
   CHAIR  SEEKINS  announced  that  without   objection  the  motion                                                            
   SENATOR OGAN  asked for  an explanation  of the  changes made  in                                                            
   Version I.                                                                                                                   
   SENATOR DONNY  OLSON, sponsor  of SB 217,  informed members  that                                                            
   three changes were made in Version I:                                                                                        
         · A letter of intent replaces the legislative findings                                                                 
        section in the bill                                                                                                     
      · Language that required researchers to get informed consent                                                              
        to use DNA information for research purposes was deleted,                                                               
        because researchers already have such requirements                                                                      
      · The definition of "DNA analysis" was refined to eliminate                                                               
        other tests outside of the parameters of genetic studies,                                                               
        for example a family history.                                                                                           
SENATOR OLSON added, "We also have protection for the DNA analysis under                                                        
Section 3 to make sure that the intent is still there under the genetic                                                         
CHAIR SEEKINS asked if this bill protects the privacy of one's DNA                                                              
analysis, not of one's family history.                                                                                          
SENATOR OLSON replied:                                                                                                          
     The DNA specific is what we're trying to go ahead and protect.                                                             
     The integrity of that is the main reason for this legislation.                                                             
     What comes out as far as  predisposition for other diseases and                                                            
     other problems  that you can get  through other means,  such as                                                            
     taking a family history and going  and taking some of the other                                                            
     blood tests, CBC  for sickle cell anemia and  things like that,                                                            
     is not part of what's in here.                                                                                             
SENATOR OLSON said  there are two polarized opinions: one  from those who                                                       
support  protection rights  and the  other from  the insurance  industry.                                                       
Version I is  his best effort to  accommodate those views and  tackle the                                                       
main  issues. He  pointed out  this legislation  is a  starting point  so                                                       
problems that surface in the future can be dealt with then.                                                                     
CHAIR SEEKINS asked if anything in  this bill would preclude someone from                                                       
using a DNA analysis to contradict family history.                                                                              
SENATOR OLSON said that is correct;  SB 217 only gives an individual full                                                       
control of his DNA information to  prevent exploitation. Although the DNA                                                       
analysis  is the  property of  the  individual, the  bill contains  three                                                       
exceptions:  for criminal identification,  paternity  disputes and  for a                                                       
medical necessity.                                                                                                              
With no  further questions for Senator  Olson, CHAIR SEEKINS  took public                                                       
MS. ROBBIE MEYER,  an attorney for the American Council  of Life Insurers                                                       
(ACLI), a national trade association  that represents about 70 percent of                                                       
the life insurance  businesses nationwide, said the ACLI  is committed to                                                       
the  principle  of   genetic  privacy  but  it  has   concerns  with  the                                                       
legislation.  Life  insurance companies  are  obligated  to keep  medical                                                       
information confidential. However, life  insurers need to obtain, retain,                                                       
use and cautiously  share consumers' personal information  to perform the                                                       
very insurance functions that consumers  purchase. The ACLI is opposed to                                                       
SB 217 in its current form and urges  that it be amended to exclude life,                                                       
disability, and long-term care insurers.  The ACLI is concerned that this                                                       
bill  could  unintentionally  interfere  or  jeopardize  its  ability  to                                                       
perform  critical business  functions,  such as  underwriting and  paying                                                       
MS. MEYER  said insurance companies are  unique in that they  are already                                                       
subject to a host of federal and  state privacy laws and regulations that                                                       
govern  an insurer's  ability to  obtain, maintain  and disclose  genetic                                                       
information.  In  addition, Alaska's  Division  of  Insurance is  in  the                                                       
process of adopting  a privacy regulation that will  govern all insurers'                                                       
ability  to disclose  medical information.  It will  require insurers  to                                                       
develop extensive security programs to  protect the integrity of customer                                                       
information.  Meanwhile,  insurers  are  already  subject  to  a  federal                                                       
privacy  bill and, most  importantly,  all insurers'  ability to get  any                                                       
medical information  is subject to  the Health Insurance  Portability and                                                       
Accountability Act (HIPAA). She cautioned  that the exceptions are not as                                                       
clear as they  need to be with  respect to retaining DNA  samples. SB 217                                                       
does not distinguish  between the requirements applicable  to DNA samples                                                       
versus  the results  of DNA  analyses.  That gives  rise to  a number  of                                                       
ambiguities with respect to insurers'  obligations. The ACLI is concerned                                                       
about  the requirement  of specific  consent  because if  anyone has  the                                                       
right  to revoke  an  insurers' ability  to  retain medical  information,                                                       
insurers'  will  not  be  able  to  continue  to  underwrite  or  pay  an                                                       
individual's claims. The  ACLI feels the consumer's  privacy with respect                                                       
to life  insurance or long-term care  insurance is addressed  by existing                                                       
federal  law and the  new Division  of Insurance  regulations. She  again                                                       
asked that life, disability and long-term  care insurers be exempted from                                                       
the legislation.                                                                                                                
CHAIR SEEKINS asked if insurers sell medical information.                                                                       
MS. MEYER said they do not.                                                                                                     
CHAIR SEEKINS asked if all ACLI members can access each others files.                                                           
MS. MEYER  said ACLI has 400  members so she  could not say, but  if they                                                       
do, it is contrary to ACLI policy and federal law.                                                                              
CHAIR SEEKINS  asked how those companies  can share information  if doing                                                       
so is against the law.                                                                                                          
MS. MEYER said the HIPAA privacy rule  and another federal law require an                                                       
individual's consent  unless the information  is being shared  to perform                                                       
business  operations,  for law  enforcement  purposes or  other  specific                                                       
TAPE 04-9, SIDE A                                                                                                             
MS. MEYER  added the new regulations  of the Division of  Insurance track                                                       
the federal laws.  3AAC 26.680 contains specific  provisions with respect                                                       
to disclosure of medical information.                                                                                           
CHAIR SEEKINS asked  if ACLI believes this bill is not  just a redundancy                                                       
of other laws but breaks new ground.                                                                                            
MS.  MEYER said  she believes  it  breaks new  ground unintentionally  by                                                       
virtue of the fact that it requires  specific consent to get a DNA sample                                                       
or  perform a  DNA test.  What ACLI  finds troublesome  is the  revocable                                                       
consent  to retain  and  disclose the  information  without any  business                                                       
exceptions. She  repeated that privacy  protections are already  in place                                                       
because insurers are subject to other laws.                                                                                     
9:55 a.m.                                                                                                                       
MS. JENNIFER RUDINGER,  Executive Director of the  Alaska Civil Liberties                                                       
Union (AkCLU),  told members the  AkCLU is opposed  to Version I  for the                                                       
following reasons.  First, in order  to protect an  individual's privacy,                                                       
the   bill  must   contain  a   comprehensive   definition  of   "genetic                                                       
characteristic" or  "genetic information." The AkLCU presented  a written                                                       
recommendation for  that definition  in a letter  to the  committee dated                                                       
February  24.  The definition  in  the  bill  is  so narrow,  just  about                                                       
everything would be  covered in the exceptions. Routine  diagnostic tests                                                       
should  require informed  consent  from  the subject  before  the DNA  is                                                       
collected,  used, distributed  or  disclosed.  The exemption  means  that                                                       
informed  consent  for  genetic  testing   or  retaining  information  is                                                       
unnecessary if the  genetic information is discovered in the  course of a                                                       
common diagnostic procedure.                                                                                                    
MS. RUDINGER said  the AkCLU believes the bill must  include some "teeth"                                                       
to prevent  employers and  insurers from  collecting genetic  information                                                       
and  discriminating against  individuals,  with  certain exceptions.  The                                                       
AkCLU maintains  that DNA information  is a constitutional  privacy right                                                       
rather than a property right. A privacy  right is supreme over a property                                                       
right. She  believes calling human  material property creates  a slippery                                                       
slope. She noted  the definition of "person" includes  a corporate entity                                                       
but  does not  speak to  a government  agency, which  the AkCLU  believes                                                       
should also  be liable  for improper  disclosure of genetic  information.                                                       
The  AkCLU  also believes  the  law  enforcement exemption  should  allow                                                       
collection  of genetic information  only for  those activities  allowable                                                       
under Alaska state law.                                                                                                         
SENATOR OGAN asked Ms. Rudinger:                                                                                                
     Some  of your  comments  concern  me. These  ethical  questions                                                            
     oppose  themselves  repeatedly  in various  contexts,  such  as                                                            
     whether people  should be  able to buy  and sell  human organs,                                                            
     fetuses, babies, etcetera.  Of course babies are a  person so -                                                            
     but I guess it's a little bit  undefined whether or not they're                                                            
     a person  in the womb  and I guess there's  a little bit  of an                                                            
     oxymoron there with some of your  positions on those issues but                                                            
     are  you talking  about babies  inside or outside  the womb?  I                                                            
     mean obviously you can't sell a baby - that's slavery but....                                                              
MS. RUDINGER replied:                                                                                                           
     ...Senator  Ogan, we're  talking  about  human material.  We're                                                            
     talking  about  people,  human   beings,  we're  talking  about                                                            
     fetuses, we're talking  about DNA in the context  of this bill.                                                            
     We're talking about human genetic material.                                                                                
MS. RUDINGER said  the question involves a philosophical  discussion that                                                       
may  be outside  the scope  of the  bill. She  noted the  bill refers  to                                                       
genetic information  as a property  right. She said  Roe v. Wade  was not                                                       
decided  on   the  basis  of   property  rights,   it  was  based   on  a                                                       
constitutional privacy right. She said  a constitutional right would give                                                       
this matter the highest level of protection.                                                                                    
CHAIR SEEKINS asked about blood.                                                                                                
MS. RUDINGER said  people sell blood,  eggs and sperm and the  AkCLU sees                                                       
that as  a slippery slope that  presents a difficult policy  question for                                                       
the legislature.  She said  the AkCLU is  concerned about  human material                                                       
being considered as  property that can be bought and sold  because of the                                                       
fear that  poor people  could be  induced or  coerced into  selling their                                                       
genetic material.                                                                                                               
SENATOR FRENCH said  he believes the definition of DNA  analysis is clear                                                       
in the bill. He asked if a cholesterol  test could be considered as a DNA                                                       
SENATOR OLSON replied:                                                                                                          
     To  a certain  degree, we  need to  be careful  here because  a                                                            
     cholesterol test obviously is one  thing that gives you certain                                                            
     information. Even  though cholesterol  itself, if you  think of                                                            
     it biochemically,  is just an  alcohol that's got  some sterols                                                            
     related to  it, but there is  the lipoproteins that  are actual                                                            
     carriers of the body fats and  so when you start thinking about                                                            
     high density  lipoproteins, low  density lipoproteins,  the LDL                                                            
     [indisc.] low  density of  proteins, you  start getting  into a                                                            
     complicated  detail there  that's certainly  not the intent  of                                                            
     this bill.  But you  are correct that  in the  purest, simplest                                                            
     form, a cholesterol test is not included.                                                                                  
SENATOR FRENCH asked if his doctor runs  a cholesterol test and gives him                                                       
the results, the  doctor would only be  in trouble under this  bill if he                                                       
used that blood to test for genetic characteristics.                                                                            
SENATOR OLSON said that is correct.                                                                                             
CHAIR SEEKINS said  that chromosomal tests are routine  for certain birth                                                       
defects. He asked if those tests would be prohibited under SB 217.                                                              
SENATOR OLSON  said not  at all.  He said the  intent of  the bill  is to                                                       
require informed consent to do any genetic testing.                                                                             
CHAIR SEEKINS  asked Senator Olson if  he intended to  include government                                                       
agencies in the definition of "person."                                                                                         
SENATOR OLSON answered:                                                                                                         
     I wrote the  bill, Mr. Chairman, and obviously there  is a fair                                                            
     amount of  tension between  the previous  testimony as  well as                                                            
     the  testimony  we just  heard.  The  bill  is intended  to  be                                                            
     exactly the  way it is right now  because of what's going  on -                                                            
     the tension  that's there,  there has  to be  a fair  amount of                                                            
     give and take. There are details  on one side that one wants to                                                            
     go into, details that the other  side really wants to get into,                                                            
     but this is the best-crafted bill we have so far.                                                                          
CHAIR SEEKINS said  he was trying to determine whether  Senator Olson was                                                       
looking at "the entire universe and not  trying to split it, of people or                                                       
entities that  could collect  this information  and possibly  disseminate                                                       
it." He  asked if  Senator Olson  does not  intend to include  government                                                       
agencies into that net.                                                                                                         
SENATOR OLSON said that is correct.                                                                                             
SENATOR THERRIAULT  asked if the  bill applies  to any DNA  test required                                                       
under the criminal statutes.                                                                                                    
SENATOR OLSON said  that is correct. The three exceptions  in the bill on                                                       
page  2 pertain  to  law enforcement,  medical  necessity, and  paternity                                                       
CHAIR SEEKINS announced  that he would  hold SB 217 in committee  so that                                                       
further questions  could be  answered. He then  adjourned the  meeting at                                                       
10:06 a.m.                                                                                                                      

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