Bill Text: CA SB1267 | 2011-2012 | Regular Session | Amended

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: Genetic Information Privacy Act.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Introduced - Dead) 2012-05-24 - Held in committee and under submission. [SB1267 Detail]

Download: California-2011-SB1267-Amended.html

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BILL NUMBER: SB 1267	AMENDED
	BILL TEXT

	AMENDED IN SENATE  MARCH 27, 2012

INTRODUCED BY   Senator Padilla

                        FEBRUARY 23, 2012

    An act to amend Sections 105280 and 109910 of the Health
and Safety Code, relating to public health.   An act to
add Chapter 2.6 (commencing with Section 56.18) to Part 2.6 of
Division 1 of the Civil Code, relating to genetic information. 


	LEGISLATIVE COUNSEL'S DIGEST


   SB 1267, as amended, Padilla.  Public health. 
 Genetic Information Privacy Act.  
   Existing law prohibits discrimination on the basis of genetic
information under various provisions of law, including, among others,
the Unruh Civil Rights Act and the California Fair Employment and
Housing Act. Existing law prohibits discrimination in the enrollment
of health insurance plans on the basis of an individual's genetic
characteristics, as defined. Existing law also imposes prohibitions
on the disclosure by a health care service plan of the results of a
test for a genetic characteristic contained in an applicant's or
enrollee's medical records.  
   This bill would establish the Genetic Information Privacy Act,
which would provide that an individual's genetic information, as
defined, is protected by the right of privacy. The bill would,
notwithstanding any other law, prohibit any person, as defined, from
obtaining, analyzing, or disclosing genetic information without the
written authorization of the individual to whom the information
pertains, as specified, and would establish civil and criminal
penalties for a violation of this prohibition, as specified. However,
this bill would exempt from these prohibitions and penalties law
enforcement officials in the execution of their official duties,
hospitals, laboratories, and physicians carrying out court-ordered
tests, licensed health care professionals in medical emergencies,
coroners and medical examiners in the execution of their official
duties, any screening of newborn infants required by state or federal
law, and disaggregated and anonymized data, as defined, that was
either collected before the bill's enactment or if written consent is
obtained. By creating new crimes, the bill would impose a
state-mandated local program.  
   The California Constitution requires the state to reimburse local
agencies and school districts for certain costs mandated by the
state. Statutory provisions establish procedures for making that
reimbursement.  
   This bill would provide that no reimbursement is required by this
act because it creates new crimes.  
   Existing law requires the State Department of Public Health to
administer various public health programs, including the childhood
lead poisoning prevention program and the food safety inspection
program.  
   This bill would make technical, nonsubstantive changes to these
provisions. 
   Vote: majority. Appropriation: no. Fiscal committee:  no
  yes  . State-mandated local program:  no
  yes  .


THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:

   SECTION 1.    Chapter 2.6 (commencing with Section
56.18) is added to Part 2.6 of Division 1 of the   Civil
Code   , to read:  
      CHAPTER 2.6.  GENETIC PRIVACY


   56.18.  (a) This chapter shall be known, and may be cited, as the
Genetic Information Privacy Act.
   (b) For purposes of this chapter, the following definitions apply:

   (1) "Anonymized" means data from which an individual's identifying
information has been removed.
   (2) "DNA sample" means any human biological specimen that is
obtained or retained for the purpose of extracting and analyzing DNA
to perform a genetic test.
   (3) "Genetic characteristic" includes a gene, chromosome, or
alteration thereof that may be tested to determine the existence or
risk of a disease, disorder, trait, propensity, or syndrome, or to
identify an individual or a blood relative.
   (4) "Genetic information" means, with respect to an individual,
information about the genetic tests of the individual, the genetic
tests of the individual's family members, and the manifestation of a
disease or disorder in family members of the individual. The term
includes a request for, or receipt of, genetic services, or
participation in clinical research that includes genetic services, by
the individual or a family member of the individual.
   (5) "Genetic service" means a genetic test, genetic education, or
genetic counseling, including obtaining, interpreting, or assessing
genetic information.
   (6) "Genetic test" means a test for determining the presence or
absence of genetic characteristics in an individual or the individual'
s blood relatives, including tests of nucleic acids such as DNA, RNA,
and mitchondrial DNA, chromosomes, or proteins in order to diagnose
or determine a genetic characteristic.
   (7) "Person" means an individual, partnership, corporation,
association, business, business trust, or legal representative of an
organization.
   56.19.  (a) Genetic information is protected by the right of
privacy, and, notwithstanding subdivision (c) of Section 56.10, or
any other law, shall not be obtained, analyzed, retained, or
disclosed without the written authorization of the individual
pursuant to subdivision (g).
   (b) Any person who negligently violates subdivision (a) shall be
assessed a civil penalty in an amount not to exceed one thousand
dollars ($1,000) plus court costs, as determined by the court, which
penalty and costs shall be paid to the individual to whom the genetic
information pertains.
   (c) Any person who willfully violates subdivision (a) shall be
assessed a civil penalty in an amount not less than one thousand
dollars ($1,000) and not more than five thousand dollars ($5,000)
plus court costs, as determined by the court, which penalty and costs
shall be paid to the individual to whom the genetic information
pertains.
   (d) Any person who willfully or negligently violates subdivision
(a) and the violation results in economic, bodily, or emotional harm
to the individual to whom the genetic information pertains, is guilty
of a misdemeanor punishable by a fine not to exceed ten thousand
dollars ($10,000).
   (e) In addition to the penalties listed in subdivisions (b) and
(c), a person who commits an act described in subdivision (b) or (c)
shall be liable to the person to whom the genetic information
pertains for all actual damages, including damages for economic,
bodily, or emotional harm which is proximately caused by the act.
   (f) Each violation of this section is a separate and actionable
offense.
   (g) The written authorization required by this section shall
satisfy all of the following requirements:
   (1) Is written in plain language and is in a typeface no smaller
than 14-point type.
   (2) Is dated and signed by the individual or a person authorized
to act on behalf of the individual.
   (3) Specifies the types of persons authorized to obtain, analyze,
or disclose genetic information about the individual.
   (4) Specifies the nature of the genetic information authorized to
be obtained, analyzed, or disclosed.
   (5) States the name or functions of the persons or entities
authorized to obtain, analyze, or receive the information.
   (6) Specifies the purposes for which the information is collected.

   (7) Specifies the length of time the authorization shall remain
valid.
   (8) Specifies whether the genetic information may be used for any
commercial purpose.
   (9) Specifies whether the genetic information shall remain
identifiable or shall be made nonidentifiable.
   (10) If the information is retained, specifies the manner in which
the information shall be stored.
   (11) Requires the destruction of the genetic information and
sample after the specific purpose for which the consent was granted
has been fulfilled.
   (12) Permits the individual to limit access to the information to
a certain person or persons.
   (13) Permits the individual to revoke his or her consent in
writing at any time.
   (14) Advises the individual signing the authorization of the right
to receive a copy of the authorization. Written authorization is
required for each separate disclosure of the genetic information.
   (h) This section shall not apply to the following:
   (1) A law enforcement official in the execution of his or her
official duties.
   (2) A hospital, laboratory, or physician carrying out
court-ordered tests for genetic information.
   (3) A licensed health care professional, as defined in Section
56.05, in medical emergencies.
   (4) A coroner or medical examiner in the execution of his or her
official duties.
   (5) Disaggregated and anonymized data that was collected before
the enactment of the act adding this section.
   (6) Any screening of newborn infants required by state or federal
law.
   (7) Disaggregated and anonymized data if written consent under
subdivision (g) is obtained. 
   SEC. 2.    No reimbursement is required by this act
pursuant to Section 6 of Article XIII B of the California
Constitution because the only costs that may be incurred by a local
agency or school district will be incurred because this act creates a
new crime or infraction, eliminates a crime or infraction, or
changes the penalty for a crime or infraction, within the meaning of
Section 17556 of the Government Code, or changes the definition of a
crime within the meaning of Section 6 of Article XIII B of the
California Constitution.  
  SECTION 1.    Section 105280 of the Health and
Safety Code is amended to read:
   105280.  For purposes of this chapter, the following definitions
apply:
   (a) "Appropriate case management" means health care referrals,
environmental assessments, and educational activities, performed by
the appropriate person, professional, or entity, necessary to reduce
a child's exposure to lead and the consequences of the exposure, as
determined by the United States Centers for Disease Control, or as
determined by the department pursuant to Section 105300.
   (b) "Lead poisoning" means the disease present when the
concentration of lead in whole venous blood reaches or exceeds levels
constituting a health risk, as specified in the most recent United
States Centers for Disease Control guidelines for lead poisoning as
determined by the department, or when the concentration of lead in
whole venous blood reaches or exceeds levels constituting a health
risk as determined by the department pursuant to Section 105300.
   (c) "Department" means the State Department of Public Health.
   (d) "Health assessment" has the same meaning as prescribed in
Section 6800 of Title 17 of the California Code of Regulations.
   (e) "Screen" means the medical procedure by which the
concentration of lead in whole venous blood is measured.
   (f) "Health care" means the identification, through evaluation and
screening, if indicated, of lead poisoning, as well as any followup
medical treatment necessary to reduce the elevated blood lead levels.

   (g) "Environmental lead contamination" means the persistent
presence of lead in the environment, in quantifiable amounts, that
results in ongoing and chronic exposure to children. 

  SEC. 2.    Section 109910 of the Health and Safety
Code is amended to read:
   109910.  "Department" means the State Department of Public Health.