BILL ANALYSIS �
SB 559
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Date of Hearing: June 14, 2011
ASSEMBLY COMMITTEE ON JUDICIARY
Mike Feuer, Chair
SB 559 (Padilla) - As Amended: February 17, 2011
As Proposed to be Amended
SENATE VOTE : 25-13
SUBJECT : Discrimination: genetic information
KEY ISSUE : SHOULD CALIFORNIA LAW SPECIFICALLY PROHIBIT
DISCRIMINATION BASED ON GENETIC INFORMATION?
FISCAL EFFECT : As currently in print this bill is keyed fiscal.
SYNOPSIS
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. This bill expands 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.
This bill is supported by among others, labor organizations, the
Council for Responsible Genetics, Disability Rights California
and the California Employment Lawyers Association. Explains the
Disability Rights Legal Center: "Genetic testing for hereditary
predispositions to cancer can help individuals manage risks
through preventive screenings and surgeries. These preventative
measures can help decrease health care costs and save lives.
However, some individuals opt not to take a genetic test for
fear of genetic discrimination. By expanding protections
against genetic discrimination, �SB] 559 will both expand civil
rights as well as increase the number of individuals taking
genetic tests and therefore having access to preventative care."
The bill has no reported opposition.
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SUMMARY : Prohibits discrimination based on genetic information.
Specifically, this bill :
1)Prohibits discrimination under Unruh and FEHA on the basis of
genetic information.
2)Prohibits discrimination in state government programs,
benefits and activities, or in programs receiving financial
assistance from the state on the basis of genetic information.
3)Defines "genetic information" as information about any of the
following: (a) an 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. 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. Excludes information about sex or age of an
individual from the definition of genetic information.
4)States the findings and intent of the Legislature that, among
other things: (a) 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; (b) examples of genetic
discrimination in the workplace include the use of
preemployment genetic screening at Lawrence Berkeley
Laboratory; (c) the State of California has a compelling
public interest in realizing the medical promise of genomics,
but also has a compelling public interest in relieving the
fear of discrimination and in prohibiting its actual practice.
EXISTING LAW :
1)Prohibits, under the Unruh Civil Rights Act, business
establishments from discriminating on the basis of sex, race,
color, religion, ancestry, national origin, disability,
medical condition, marital status, or sexual orientation and
provides civil remedies for violations of its provisions.
(Civil Code Section 51 et seq.)
2)Prohibits, under the Fair Employment and Housing Act,
discrimination in housing and employment on the basis of race,
religious creed, color, national origin, ancestry, physical
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disability, mental disability, medical condition, marital
status, sex, age, or sexual orientation. (Government Code
Section 12920 et seq.)
3)Prohibits discrimination in state government programs,
benefits and activities, or in programs receiving financial
assistance from the state, on the basis of race, national
origin, ethnic group identification, religion, age, sex,
sexual orientation, color or disability. (Government Code
Section 11135.)
4)Prohibits licensees under the Business & Professions Code from
discriminating on the basis of any characteristic set forth in
Unruh, but provides that this provision should not be
interpreted to prevent a physician or licensed health care
professional from considering those characteristics if
medically necessary to determine the appropriate diagnosis or
treatment of a patient. (Business & Professions Code Section
125.6.)
5)Prevents health insurance plans from discriminating on the
basis of a person's genetic characteristics, as defined.
(Health & Safety Code Section 1374.7.)
6)Limits how life or disability insurance plans can use a
person's genetic characteristics, as defined. (Insurance Code
Sections 10140, 10146 et seq.)
COMMENTS : 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.
The Fair Employment and Housing Act, the Unruh Civil Rights Act
and other statutes prohibit discrimination in employment,
housing, public accommodation, government programs 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
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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.
In support of 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.
Genetic Information Has Historically Been Used to Discriminate :
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 used
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genetic screening, including screening for the sickle cell
anemia trait, 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 Lab. (1998) 135 F.3d
1260.)
Federal Legislation Provides Some Limited Protections Against
Discrimination : In 2008, Congress enacted the federal Genetic
Information Nondiscrimination Act (GINA) which prohibits
discrimination in employment and health insurance based on
genetic information. (P.L. 110-233.) The federal GINA garnered
bipartisan 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 prohibits health insurers or health plan
administrators from requiring genetic information about an
individual or the individual's family members, or using it for
decisions regarding coverage, rates, or preexisting conditions.
The federal law also generally prohibits employers from using
genetic information for hiring, firing, or promotion decisions.
However, GINA is not comprehensive as California law is in
protecting against discrimination in other areas. For example,
GINA's prohibition on employer discrimination only applies to
employers of 15 or more employees. This bill codifies in state
law the same protections in GINA, but also expands upon those
protections.
This Bill Adds Genetic Information to the List of Protected
Classes under the Unruh Civil Rights Act and California Fair
Employment and Housing Act : 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 Act is meant to cover all
arbitrary and intentional discrimination by a business
establishment on the basis of the personal characteristics
listed above.
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
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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 adds genetic information to the list of protected
classes in Unruh and under FEHA to further enhance protections
against discrimination. While this bill would not have
prevented Lawrence Berkeley Laboratory from collecting its
employees' genetic information, it would have prevented the lab
from using that information to discriminate against employees.
For example, if an employee was 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.
Author's Amendments Seek to Prevent Discrimination in Government
Programs Based on Genetic Information : In order to ensure that
discrimination on the basis of genetic information is prohibited
in state government programs, benefits and activities, and in
programs receiving financial assistance from the state, the
author rightly proposes to amend the bill as follows:
On page 8, line 35, after "color," insert: genetic information
On page 9, line 12, after "(c)" insert: As used in this
section, "genetic information" has the same definition as Civil
Code Section 51(e)(2).
Renumber remaining subdivisions.
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
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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, the author hopes 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.
Definition of Genetic Information : This bill defines 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 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, protects an employee from being
discriminated against based both on his or her own genetic
information, as well his or her family member's genetic
information.
Medically Necessary Diagnosis and Treatment Not Impeded by This
Bill : In order to ensure that appropriate medical diagnosis and
treatment is not limited based on Unruh's anti-discrimination
protections, existing law provides that doctors and other
licensed health care professional are not prevented from
considering the characteristics under Unruh if medically
necessary to determine the appropriate diagnosis or treatment of
a patient. By adding genetic information to those
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characteristics listed under Unruh, this bill appropriately
ensures that health care professionals can use genetic
information for medical diagnosis and treatment of patients.
Related Pending Legislation : AB 887 (Atkins) amends Unruh to
add gender identity and gender expression under the definition
of "sex" and would define these new terms. This bill passed
this Committee, as well as the full Assembly, and is now in the
Senate.
SB 111 (Yee) makes it a violation of Unruh 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 passed the Senate and is being considered
by this Committee today.
ARGUMENTS IN SUPPORT : 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 Disability Rights Legal Center writes:
"Genetic testing for hereditary predispositions to cancer can
help individuals manage risks through preventive screenings and
surgeries. These preventative measures can help decrease health
care costs and save lives. However, some individuals opt not to
take a genetic test for fear of genetic discrimination. By
expanding protections against genetic discrimination, �SB] 559
will both expand civil rights as well as increase the number of
individuals taking genetic tests and therefore having access to
preventative care."
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Writes the California Employment Lawyers Association: "It is
time that California's workplace discrimination laws come into
conformity with federal law and acknowledge this fundamental
protection. With the economy suffering and health care costs
soaring, workers should not have to forgo genetic testing out of
fear of losing their job, harassment or retaliation."
Adds Disability Rights California: "There is a shameful history
of genetic based discrimination in California. . . . �T]he
combination of increased effort and interest in this area of
science and advances in automation mean that genome sequencing
will be available to the general public. As more people gain
access to their personal human genome information there is an
increased potential for misuse of genetic information."
REGISTERED SUPPORT / OPPOSITION :
Support
American Federation of State, County and Municipal Employees,
AFL-CIO
California Communities United Institute
California Conference Board of the Amalgamated Transit Union
California Conference of Machinists
California Employment Lawyers Association
California Nurses Association
California Official Court Reporters Association
California Teamsters Public Affairs Council
Council for Responsible Genetics
Disability Rights California
Disability Rights Legal Center
Engineers and Scientists of California
International Longshore and Warehouse Union
Professional and Technical Engineers, Local 21
UNITE HERE!
United Food and Commercial Workers - Western States Conference
Utility Workers Union of America, Local 132
Opposition
None on file
Analysis Prepared by : Leora Gershenzon / JUD. / (916) 319-2334
SB 559
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