BILL ANALYSIS Ó ------------------------------------------------------------ |SENATE RULES COMMITTEE | SB 559| |Office of Senate Floor Analyses | | |1020 N Street, Suite 524 | | |(916) 651-1520 Fax: (916) | | |327-4478 | | ------------------------------------------------------------ THIRD READING Bill No: SB 559 Author: Padilla (D) Amended: As introduced Vote: 21 SENATE JUDICIARY COMMITTEE : 3-2, 4/26/11 AYES: Evans, Corbett, Leno NOES: Harman, Blakeslee SENATE APPROPRIATIONS COMMITTEE : Senate Rule 28.8 SUBJECT : Discrimination: genetic information SOURCE : Author DIGEST : this bill expands the prohibited bases of discrimination under the Unruh Civil Rights Act and the California Fair Employment and Housing Act to include genetic information. ANALYSIS : Existing law, the Unruh Civil Rights Act (Unruh), 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. (Civil Code Section 51 et seq.) Existing law, the Fair Employment and Housing Act (FEHA), prohibits discrimination in housing and employment on the CONTINUED SB 559 Page 2 basis of race, religious creed, color, national origin, ancestry, physical disability, mental disability, medical condition, marital status, sex, age, or sexual orientation. (Government Code Section 12920 et seq.) This bill prohibits discrimination under Unruh and FEHA on the basis of genetic information. This bill defines 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 includes 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 excludes from the meaning any "information about the sex or age of any individual." Existing law prohibits health facilities from denying emergency services based upon any characteristic listed or defined in Unruh. (Health & Safety Code Section 1317.) This bill, by adding genetic information to Unruh, also prohibits health facilities from denying emergency services based upon a person's genetic information. 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. (Government Code Sections. 12955, 12956.2.) This bill allows 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. Background SB 559 Page 3 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. 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.) SB 559 Page 4 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 FEHA and the Unruh 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 adds genetic discrimination to the list of the prohibited classifications for discrimination under Unruh and FEHA to make it more relevant to California FISCAL EFFECT : Appropriation: No Fiscal Com.: Yes Local: Yes SUPPORT : (Verified 5/10/11) American Federation of State, County and Municipal Employees California Conference Board of the Amalgamated Transit Union California Conference of Machinists California Employment Lawyers Association 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! SB 559 Page 5 Utility Workers Union of America, Local 132 ARGUMENTS IN SUPPORT : The author's office states, 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 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 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 SB 559 Page 6 of that fact, members of those groups may be stigmatized or discriminated against as a result of that information." RJG:do 5/11/11 Senate Floor Analyses SUPPORT/OPPOSITION: SEE ABOVE **** END ****