BILL ANALYSIS �
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from the time it was enacted to when it was finally repealed in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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