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sterilization law in 1909 and sterilized nearly 22,000 people from the time it was enacted to when it was finally repealed in 1979.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. (more) SB 559 (Padilla) Page 2 of ? 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 SB 559 (Padilla) Page 3 of ? 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.) SB 559 (Padilla) Page 4 of ? 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 SB 559 (Padilla) Page 5 of ? 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 SB 559 (Padilla) Page 6 of ? 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, SB 559 (Padilla) Page 7 of ? 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 SB 559 (Padilla) Page 8 of ? 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 ************** SB 559 (Padilla) Page 9 of ?