SB 222, as introduced, 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 state the intent of the Legislature to enact legislation that would protect individuals from the unauthorized use of their genetic information, ensure that genetic information is personal information that is not collected, stored, or disclosed without the individual’s authorization, provide protections for the collection, storage, and authorized use of genetic information, and 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.
This bill would also make findings and declarations regarding genetic privacy.
Vote: majority. Appropriation: no. Fiscal committee: no. State-mandated local program: no.
The people of the State of California do enact as follows:
The Legislature finds and declares all of the
2following:
3(a) On October 11, 2012, the Presidential Commission for the
4Study of Bioethical Issues (commission) released a report titled
5“Privacy and Progress in Whole Genome Sequencing,”
6recommending the adoptions of policies to help ensure privacy
7and security, as the field of genomics advances.
8(b) Various national and state policies are in place to protect
9personally identifiable health information and records.
10(c) The commission urges federal and state governments to
11ensure a consistent floor of privacy protections covering whole
12genome sequencing data
regardless of how they were obtained.
13(d) Policies should protect individual genetic information by
14prohibiting the unauthorized use of surreptitious collection.
15(e) It is the intent of the Legislature to enact legislation that
16would protect individuals from the unauthorized collection, storage,
17and disclosure of their genetic information.
18(f) It is the intent of the Legislature to enact legislation that
19would ensure that genetic information is personal information that
20is not collected, stored, or disclosed without the individual’s
21authorization.
22(g) It is the intent of the Legislature to enact legislation that
23would provide protections for the collection, storage, and
24authorized use of genetic information.
25(h) It is the intent of the Legislature to enact legislation that
26would promote the use of genetic information for legitimate
27reasons, including, but not limited to, health care, research,
28advancement of medicine, and educational purposes, as the field
29of genomics advances.
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