BILL ANALYSIS                                                                                                                                                                                                    Ó






                             SENATE JUDICIARY COMMITTEE
                             Senator Noreen Evans, Chair
                              2011-2012 Regular Session


          SB 559 (Padilla)
          As Introduced
          Hearing Date: April 26, 2011
          Fiscal: Yes
          Urgency: No
          EDO/BP
                    

                                        SUBJECT
                                           
                         Discrimination: Genetic Information

                                      DESCRIPTION  

          This bill would expand the prohibited bases of discrimination 
          under the Unruh Civil Rights Act (Unruh) and the California Fair 
          Employment and Housing Act (FEHA) to include genetic 
          information.  

                                      BACKGROUND  

          Genetic testing is a sophisticated technique used to test for 
          genetic disorders.  The technology can lead to earlier detection 
          of illnesses, sometimes even before symptoms have begun, which 
          allows individuals to take steps early on to reduce the 
          likelihood that they will contract a particular disease.  These 
          rapid advances provide new opportunities for medical progress, 
          but may also give rise to the potential for discrimination based 
          on misuse of the genetic information.  Unfortunately, history 
          shows this to be the case.   

          Based on the early science of genetics, state laws were enacted 
          providing for the sterilization of persons deemed to have 
          genetic "defects."  California passed a nonconsensual 
          sterilization law in 1909 and sterilized nearly 22,000 people 
          from the time it was enacted to when it was finally repealed in 
          1979.  Individuals subjected to sterilization had been diagnosed 
          with, among other things, mental retardation, mental disease, 
          epilepsy, blindness, and hearing loss.  Most of these people 
          were young, poor women.  

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          Misuse of genetic information was again used as a basis for 
          discrimination in the 1970's when programs were implemented to 
          screen and identify carriers of sickle cell anemia, a disease 
          which predominately affects African Americans.  State 
          legislatures began enacting laws requiring all African Americans 
          to be screened for sickle cell anemia even though other ethnic 
          backgrounds are potential carriers of the disease.   As a 
          result, people carrying the sickle cell anemia trait had 
          difficulty finding employment and health insurance even if they 
          did not ultimately develop the disease.  

          As recently as the 1990's, the Lawrence Berkeley Laboratory in 
          California used genetic screening for over twenty-five years 
          under the premise of testing employees for drugs.  The employees 
          brought suit against their employer, alleging a violation of 
          both federal and California privacy rights which led to a court 
          decision in favor of the employees. (Norman-Bloodsaw v. Lawrence 
          Berkeley Laboratory (1998) 135 F.3d 1260.)

          In 2008, Congress enacted the federal Genetic Information and 
          Nondiscrimation Act (GINA) which prohibits discrimination in 
          group health plan coverage based on genetic information.  
          Specifically, GINA prohibits: (1) health insurance issuers from 
          basing premiums for an employer or a group on genetic 
          information; (2) plans and issuers from requesting or requiring 
          an individual to undergo a genetic test; and (3) a plan from 
          collecting genetic information (including family medical 
          history) prior to enrollment or for underwriting purposes.

          The Fair Employment and Housing Act (FEHA) and the Unruh Civil 
          Rights Act prohibit discrimination in employment, housing, 
          public accommodation, and services provided by business 
          establishments on the basis of specified personal 
          characteristics such as sex, race, color, national origin, 
          religion, and disability.  Over time, these statutes have 
          evolved to include other characteristics such as medical 
          condition, marital status and sexual orientation to generally 
          reflect the state's public policy against discrimination in all 
          forms.  

          This bill would add genetic discrimination to the list of the 
          prohibited classifications for discrimination under Unruh and 
          FEHA to make it more relevant to California

                                CHANGES TO EXISTING LAW
           
                                                                      



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           1.Existing law  , the Unruh Civil Rights Act, generally prohibits 
            business establishments from discriminating on the basis of 
            sex, race, color, religion, ancestry, national origin, 
            disability, or medical condition, marital status, or sexual 
            orientation and provides civil remedies for violations of its 
            provisions.  (Civ. Code Sec. 51 et seq.)

             Existing law  , the Fair Employment and Housing Act, prohibits 
            discrimination in housing and employment on the basis of race, 
            religious creed, color, national origin, ancestry, physical 
            disability, mental disability, medical condition, marital 
            status, sex, age, or sexual orientation.  (Gov. Code Sec. 
            12920 et seq.)  
           
             This bill  would also prohibit discrimination under Unruh and 
            FEHA on the basis of genetic information. 

             This bill  would define genetic information under Unruh and 
            FEHA to mean "with respect to any individual, information 
            about any of the following: (A) the individual's genetic 
            tests; (B) the genetic tests of family members of the 
            individual; and (C) the manifestation of a disease or disorder 
            in family members of the individual." This bill would include 
            in the meaning of genetic information "any request for, or 
            receipt of, genetic services, or participation in clinical 
            research that includes genetic services, by an individual or 
            any family member of the individual."  This bill would exclude 
            from the meaning any "information about the sex or age of any 
            individual. "

           2.Existing law  prohibits health facilities from denying 
            emergency services based upon any characteristic listed or 
            defined in Unruh.   (Health & Saf. Code Sec. 1317.)

             This bill  , by adding genetic information to Unruh, would also 
            prohibit health facilities from denying emergency services 
            based upon a person's genetic information. 

           3.Existing law  provides that the legal owner of a property who 
            believes that they are subject to a restrictive covenant that 
            unlawfully discriminates because of race, color, religion, 
            sex, sexual orientation, familial status, marital status, 
            disability, national origin, source of income, or ancestry, 
            may record a document entitled "Restrictive Covenant 
            Modification," following a specified process.  (Gov. Code 
            Secs. 12955, 12956.2.)  
                                                                      



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             This bill  would also allow a property owner to seek the 
            removal of any unlawful restrictive covenant that 
            discriminates on the basis of genetic information following 
            the same specified process.
           
           
                                        COMMENT
          
          1.  Stated need for the bill  
          
          The author writes:
          
            Genetic testing can allow individuals to take steps to reduce 
            the likelihood that they will contract a particular disorder. 
            New knowledge about genetics may also allow for the 
            development of better therapies that are more effective 
            against disease or have fewer side effects than current 
            treatments.  While these rapid advances promise significant 
            medical progress, they also give rise to the potential misuse 
            of genetic information to discriminate.

            Although genes are facially neutral markers, many genetic 
            conditions and disorders are associated with particular racial 
            and ethnic groups and gender. Because some genetic traits are 
            most prevalent in particular groups, members of a particular 
            group may be stigmatized or discriminated against as a result 
            of that genetic information.

            The State of California has a compelling public interest in 
            realizing the medical promise of genomics. It also has a 
            compelling public interest in relieving the fear of 
            discrimination and in prohibiting its actual practice. While 
            Federal law was passed in 2008, with the Genetic Information 
            and Nondiscrimination Act (GINA), its range of protections is 
            incomplete for Californians.

          In support of the bill, the Council for Responsible Genetics 
          writes "during the past several decades, our understanding of 
          genetics has multiplied as procedures for identifying, analyzing 
          and manipulating DNA have advanced.  Among the many benefits of 
          these efforts are the ways they may influence preventive health, 
          reproductive planning and eventually therapies to cure illnesses 
          with a genetic component. While no one can deny that this 
          knowledge may be a blessing in finding cures to diseases with 
          genetic origins, the immediate consequences of such advances 
                                                                      



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          have led to a number of forms of individual discrimination. 
          Consider the case of Lawrence-Berkeley Laboratories, which for 
          almost twenty-five years gave its employees pre-placement and 
          annual medical examinations that included tests for syphilis, 
          sickle cell genetic markers and pregnancy without the employees' 
          knowledge or consent."

          Also in support, the California Nurses Association notes that 
          "many genetic conditions and disorders are associated with 
          particular racial, ethnic groups and genders.  Because of that 
          fact, members of those groups may be stigmatized or 
          discriminated against as a result of that information."

          2. Genetic information would be added to the existing list of 
            protected classes under the Unruh Civil Rights Act and 
            California Fair Employment and Housing Act   

          Under existing law, the Unruh Civil Rights Act generally 
          prohibits business establishments from discriminating on the 
          basis of sex, race, color, religion, ancestry, national origin, 
          disability, or medical condition, marital status, or sexual 
          orientation.  The Unruh Civil Rights Act is meant to cover all 
          arbitrary and intentional discrimination by a business 
          establishment on the basis of the personal characteristics 
          listed above.  

          Also, the California Fair Employment and Housing Act prohibits 
          discrimination in housing and employment on the basis of race or 
          color; religion; national origin or ancestry; physical 
          disability; mental disability or medical condition; marital 
          status; sex or sexual orientation; age, with respect to persons 
          over the age of 40; and pregnancy, childbirth, or related 
          medical conditions.  Additionally, FEHA prohibits discrimination 
          in housing based on the person's ability to pay. The FEHA is the 
          principal California statute prohibiting employment and housing 
          discrimination covering employers, labor organizations, 
          employment agencies, apprenticeship programs, and any person or 
          entity, who aids, abets, incites, compels, or coerces the doing 
          of a discriminatory act.  

          This bill would add genetic information to the list of protected 
          classes in Unruh and under FEHA to further enhance protections 
          against discrimination.  With respect to the Lawrence Berkeley 
          Laboratory example, staff notes that this bill would not have 
          prevented the lab from collecting its employees' genetic 
          information; however, it would have prevented the lab from using 
                                                                      



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          that information to discriminate against employees.  For 
          example, if an employee is tested and determined to have a 
          predisposition for a genetic disorder, this bill would prohibit 
          the lab from using that information to decide not to promote the 
          employee.

          3.  Genetic research and testing is undermined when the 
            information is used to discriminate
           
          In order to reap the benefits of genetic research and testing, 
          the public must be convinced that the information will not be 
          used against them as it has been in the past.  The Council for 
          Responsible Genetics (the council) notes that "a recently 
          released research survey found that the proportion of Americans 
          who are concerned about how their genetic information would be 
          stored and who would have access to that information, has 
          climbed from 65% in 2006 to an all-time high of 71% in 2010."  
          The council goes on to say "without meaningful privacy 
          safeguards and protections against discrimination, the benefits 
          of genetic testing will ultimately be lost as individuals avoid 
          tests in the fear of adverse consequences."  

          The National Council on Disability (NCD) prepared a position 
          paper on genetic discrimination in 2002.  The NCD compiled 
          numerous studies showing the fears engendered by genetic 
          discrimination including fears of disclosure of genetic 
          information to physicians.  The NCD concluded that "these fears 
          eliminate people's opportunities to learn that they are not at 
          increased risk for the genetic disorder in the family or to make 
          lifestyle changes to reduce risks." Finally, the NCD found that 
          fears relating to genetic discrimination "may also affect the 
          number of people willing to participate in scientific research.  
          By adding genetic information to the list of prohibited bases of 
          discrimination in employment, housing and in business 
          establishments, it is hoped that this bill will alleviate some 
          of the fears associated with misuse of this information, thus 
          encouraging people to confide in their physicians as well as 
          participate in genetic research. 

          4.   Removal of unlawful property restriction relating to genetic 
          information  

          Under existing law, the legal owner of a property who believes 
          that they are subject to a restrictive covenant that unlawfully 
          discriminates because of race, color, religion, sex, sexual 
          orientation, familial status, marital status, disability, 
                                                                      



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          national origin, source of income, or ancestry, may record a 
          document entitled "Restrictive Covenant Modification."  (Gov. 
          Code Secs. 12955, 12956.2.)  That document must include a copy 
          of the original document containing the unlawful language with 
          that language stricken.  The county recorder must submit the 
          modified document and the original document to the county 
          counsel for a determination of whether the original document 
          contains an unlawful restriction.  The county counsel must then 
          return the documents, and inform the recorder of its 
          determination.  The county recorder must refuse to record the 
          modification document if the county counsel finds that the 
          original document does not contain an unlawful restriction. 

          Consistent with the proposed addition of "genetic information" 
          to both FEHA and the Unruh Civil Rights Act, this bill would 
          also allow a property owner to seek the removal of any unlawful 
          restrictive covenant that discriminates on the basis of genetic 
          information pursuant to the above process.  It should be noted 
          that this bill would not modify the above process, and that the 
          legal determination of whether a provision is unlawful would 
          remain with the county counsel.

          5.  Federal Genetic Information and Non-Discrimination Act (GINA)
             
          The federal GINA garnered bi-partisan support, passing the 
          United States Senate unanimously and by a 414-1 vote in the 
          Unites States House of Representatives and was signed into law 
          by President Bush in 2008.  GINA was the first federal 
          legislation signed into law protecting an individual's genetic 
          information from discrimination in health insurance coverage and 
          employment situations.  

          This bill would codify in state law the same protections in GINA 
          and also expand upon those protections.  By including genetic 
          information in the existing California anti-discrimination 
          statutes the bill is intended to make the protections more 
          specific to California. 

          6.  Definition of genetic information  

          This bill would define genetic information to include genetic 
          tests of an individual or family member of the individual. It is 
          important to include the genetic information of an individual's 
          family members in the definition of protected classes since 
          genetic information is predominately tied to the family and 
          certain diseases are hereditary.  An employer may receive 
                                                                      



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          information about an employee's family member in circumstances 
          where an employee is applying for health insurance through their 
          employer and the application asks for the employee to list his 
          or her family history.  This bill, as defined, would protect the 
          employee from being discriminated against based on his or her 
          own genetic information, as well their family member's genetic 
          information.

           Support  :  California Conference Board of the Amalgamated Transit 
          Union; California Conference of Machinists; California Nurses 
          Association; California Official Court Reporters; California 
          Teamsters Public Affairs Council; Council for Responsible 
          Genetics; Disability Rights California; Engineer and Scientists 
          of California; International Longshore and Warehouse Union; 
          Professional and Technical Engineers, Local 21; UNITE HERE!; 
          Utility Workers Union of America, Local 132

           Opposition  :  None Known

                                        HISTORY
           
           Source  :  Author

           Related Pending Legislation  :

          AB 887 (Atkins) would amend the Unruh Civil Rights Act to add 
          gender identity and gender expression under the definition of 
          "sex" and would define these new terms.  This bill has been 
          referred to the Assembly Judiciary Committee.

          SB 111 (Yee) would make it a violation of the Unruh Civil Rights 
          Act for a business establishment to adopt or enforce a policy 
          that limits or prohibits the use of any language, unless the 
          language is justified by a business necessity and notification 
          has been provided.  This bill is in the Assembly.

           Prior Legislation  :  None Known


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