Amended in Senate April 22, 2013

Amended in Senate April 1, 2013

Senate Bill No. 222

Introduced by Senator Padilla

February 11, 2013

An act to add begin delete Section 56.19 to end delete begin insert Chapter 2.6 (commencing with Section 56.18) to Part 2.6 of Division 1 of end insert the Civil Code, relating to genetic information.

LEGISLATIVE COUNSEL’S DIGEST

SB 222, as amended, Padilla. Genetic information: privacy.

Existing law prohibits discrimination on the basis of an individual’s genetic information. Existing law protects the genetic test result contained in the medical records of an applicant to, or enrollee of, a health care service plan. Existing law establishes civil and criminal penalties for the negligent or willful disclosure of a persons genetic test results, as specified.

This bill would begin insert enact the Genetic Information Privacy Act, which would end insert declare that an individual’s genetic information is protected by the right of privacy. The bill would prohibit any person from collecting, storing, analyzing, or disclosing genetic information without the written authorization of the individual to whom the information pertains, and would include related findings and declarations. begin insert It also would prescribe specific circumstances under which genetic information may be collected, stored, analyzed, or disclosed without the authorization. end insert The bill would establish civil and criminal penalties for a violation of begin delete this prohibition end delete begin insert its provisions end insert . By creating new crimes, this 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 for a specified reason.

Vote: majority. Appropriation: no. Fiscal committee: yes. State-mandated local program: yes.

The people of the State of California do enact as follows:

SECTION 1.  

The Legislature finds and declares all of the
following:

(a) On October 11, 2012, the Presidential Commission for the
Study of Bioethical Issues (commission) released a report titled
“Privacy and Progress in Whole Genome Sequencing,”
recommending the adoptions of policies to help ensure privacy
and security, as the field of genomics advances.

(b) Various national and state policies are in place to protect
personally identifiable health information and records.

(c) The commission urges federal and state governments to
ensure a consistent floor of privacy protections covering whole
genome sequencing data regardless of how they were obtained.

(d) Policies should protect individual genetic information by
prohibiting the unauthorized use of surreptitious collection.

(e) It is the intent of the Legislature to enact legislation that
would protect individuals from the unauthorized collection, storage,
and disclosure of their genetic information.

(f) It is the intent of the Legislature to enact legislation that
would ensure that genetic information is personal information that
is not collected, stored, or disclosed without the individual’s
authorization.

(g) It is the intent of the Legislature to enact legislation that
would provide protections for the collection, storage, and
authorized use of genetic information.

(h) It is the intent of the Legislature to enact legislation that
would promote the use of genetic information for legitimate
reasons, including, but not limited to, health care, research,
advancement of medicine, and educational purposes, as the field
of genomics advances.

begin delete

SEC. 2.  

Section 56.19 is added to the Civil Code, to read:

56.19.  

(a) Genetic information is protected by the right of
privacy pursuant to Section 1 of Article I of the California
Constitution and, notwithstanding subdivision (c) of Section 56.10,
or any other law, shall not be collected, stored, analyzed, or
disclosed without the written authorization of the individual to
whom the information pertains.

(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), where 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, and emotional harm that is proximately caused by that act.

(f) Each violation of this section is a separate and actionable
offense.

(g) (1) No person or entity who sends or discloses genetic
information in a good faith attempt to comply with this section
shall be liable under this section for the conduct of the recipient.

(2) No person or entity that receives genetic information in a
good faith attempt to comply with this section shall be liable under
this section for the conduct of the sender or discloser.

end delete

begin insert

begin insert SEC. 2. end insert   

end insert

begin insert Chapter 2.6 (commencing with Section 56.18) is added
to Part 2.6 of Division 1 of the end insert begin insert Civil Code end insert begin insert , to read: end insert

begin insert

 

Chapter   begin insert 2.6. end insert Genetic Privacy

 

begin insert 56.18. end insert   

(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) “Deidentified data” is health information that does not
identify an individual, with respect to which there is no reasonable
basis to believe that the information can be used to identify an
individual.

(2) “DNA sample” means a tissue, fluid, or other bodily sample
of an individual on which a DNA analysis can be carried out.

(3) “Genetic characteristic” means any scientifically or
medically identifiable gene or chromosome, or alteration thereof,
that is known to be a cause of a disease or disorder, or that is
determined to be associated with a statistically increased risk of
development of a disease or disorder, and that is presently not
associated with any symptoms of any disease or disorder.

(4) (A) “Genetic information” means information about any
of the following:

(i) An individual’s genetic tests.

(ii) The genetic tests of that individual’s family members.

(iii) The manifestation of disease or disorder in family members
of the individual, generally referred to as family medical history.

(iv) An individual’s request for, or receipt of, genetic services,
or the participation in clinical research that includes genetic
services by the individual or a family member of the individual.

(v) The genetic information of a fetus carried by an individual
or by a pregnant woman who is a family member of the individual
and the genetic information of any embryo legally held by the
individual or family member using an assisted reproductive
technology.

(B) Genetic information does not include information about the
sex or age of the individual, the sex or age of family members, or
information about the race or ethnicity of the individual or family
members that is not derived from a genetic test.

(5) “Genetic service” means a genetic test, genetic education,
or genetic counseling, including obtaining, interpreting, or
assessing genetic information.

(6) “Genetic test” means a genetic test; genetic counseling,
including obtaining, interpreting, or assessing genetic information;
or genetic education.

(7) “Person” means a natural person, trust or estate,
partnership, corporation, professional association or corporation,
or other entity, public or private.

begin insert 56.18.1. end insert   

(a) Genetic information is protected by the right of
privacy pursuant to Section 1 of Article I of the California
Constitution and, notwithstanding subdivision (c) of Section 56.10,
or any other law, shall not be collected, stored, analyzed, or
disclosed without the written authorization of the individual to
whom the information pertains.

(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), where 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, and emotional harm that is proximately caused by that act.

(f) Each violation of this section is a separate and actionable
offense.

(g) Any person or entity that wishes to obtain genetic
information, other than a person or entity authorized to receive
genetic information pursuant to subdivision (h), shall obtain a
valid authorization for the release of that information. The written
authorization required by this subdivision shall do all of the
following:

(1) Be written in plain language and in a typeface no smaller
than 14-point type.

(2) Be dated and signed by the individual or a person authorized
to act on behalf of the individual.

(3) Specify the types of persons authorized to disclose
information about the individual.

(4) Specify the nature of the information authorized to be
disclosed.

(5) State the name or functions of the persons or entities
authorized to receive the information.

(6) Specify the purposes for which the information is being
collected.

(7) Specify the length of time the authorization shall remain
valid.

(8) Advise the person signing the authorization of the right to
receive a copy of the authorization.

(h) (1) Genetic information may be collected, stored, analyzed,
or disclosed without the authorization required by subdivision (g),
in accordance with paragraph (2), provided that the entity may
collect, store, analyze, or disclose the information only for the
purposes specified. Use for any other purpose is subject to the
authorization required by subdivision (a).

(2) Genetic information may be collected, stored, analyzed, or
disclosed under this subdivision, as follows:

(A) By a law enforcement official or correctional officer in the
execution of his or her official duties consistent with existing law.

(B) By a hospital, laboratory, or physician carrying out
court-ordered tests for genetic information.

(C) By a licensed health care professional, as defined in Section
56.05, in a medical emergency.

(D) By a coroner or medical examiner, in the execution of his
or her official duties consistent with existing law.

(E) For purposes of any screening of a newborn infant required
by state or federal law.

(F) If the information is in the form of deidentified data.

(G) By any person or entity covered by and required to comply
with any of the following:

(i) The Health Insurance Portability and Accountability Act of
1996 (Public Law 104-191).

(ii) Section 56.11 of the Confidentiality of Medical Information
Act (Part 2.6 (commencing with Section 56)).

(iii) Section 791.13, 10123.35 or Article 2.6 (commencing with
Section 10146) of Chapter 1 or Part 2 of Division 2 of the
Insurance Code.

(iv) Section 50.25 of Title 21 of the Code of Federal Regulations.

(v) Section 46.116 of Title 28 of the Code of Federal
Regulations.

end insert

SEC. 3.  

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.