SB 41 — Privacy: genetic testing companies.

Summary

Existing law, the California Consumer Privacy Act of 2018, provides various protections to a consumer with respect to a business that collects the consumer's personal information, including biometric information such as the consumer's deoxyribonucleic acid (DNA) . The act requires a business that collects a consumer's personal information to, at or before the point of collection, inform the consumer as to the categories of personal information to be collected and the purposes for which the information will be used, and grants to a consumer the right to opt-out of the sale of the consumer's personal information by the business to a third party. Existing law also prohibits the disclosure by a health care service plan of the results of a test for a genetic characteristic to a third party in a manner that identifies or provides identifying characteristics of the person to whom the test results apply, except pursuant to a written authorization to do so. This bill would establish the Genetic Information Privacy Act, which would require a direct-to-consumer genetic testing company, as defined, to provide a consumer with certain information regarding the company's policies and procedures for the collection, use, maintenance, and disclosure, as applicable, of genetic data, and to obtain a consumer's express consent for collection, use, or disclosure of the consumer's genetic data, as specified. This bill would require a direct-to-consumer genetic testing company to honor a consumer's revocation of consent in accordance with certain procedures, and to destroy a consumer's biological sample within 30 days of revocation of consent. The bill would further require a direct-to-consumer genetic testing company to implement and maintain reasonable security procedures and practices to protect a consumer's genetic data against unauthorized access, destruction, use, modification, or disclosure, and develop procedures and practices to enable a consumer to access their genetic data, and to delete their account and genetic data, as specified. The bill would exclude from its provisions the California Newborn Screening Program, specific tests, and certain information, providers, entities, and activities subject to specified state and federal laws. This bill would provide that the act does not reduce a direct-to-consumer genetic testing company's duties, obligations, requirements, or standards under any applicable state and federal law for the protection of privacy and security and would further provide, if a conflict exists between the act and any other law, that the provisions of the law that afford the greatest protection for the right of privacy for consumers shall control. This bill would impose civil penalties for a violation of those provisions, as specified. The bill would require actions for relief pursuant to these provisions to be prosecuted exclusively by the Attorney General, a district attorney, county counsel, city attorney, or city prosecutor, as specified, in the name of the people of the State of California upon their own complaint or upon the complaint of a board, officer, person, corporation, or association or upon a complaint by a person who has suffered injury in fact and has lost money or property as a result of the violation of the act. Because the bill would require local officials to perform additional duties, 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, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.

Bill Text

• Chaptered 10/06/21 - Chaptered Current pdf October 06, 2021
• Enrolled 09/13/21 - Enrolled pdf September 13, 2021
• Amended 08/30/21 - Amended Assembly pdf August 30, 2021
• Amended 06/17/21 - Amended Assembly pdf June 17, 2021
• Amended 06/14/21 - Amended Assembly pdf June 14, 2021
• Amended 03/11/21 - Amended Senate pdf March 11, 2021
• Introduced 12/07/20 - Introduced pdf December 07, 2020
• SB41 View text html

Action History

1. October 06, 2021

   Chaptered by Secretary of State. Chapter 596, Statutes of 2021.

2. October 06, 2021

   Approved by the Governor.

3. September 17, 2021

   Enrolled and presented to the Governor at 1:30 p.m.

4. September 09, 2021

   Assembly amendments concurred in. (Ayes 38. Noes 0. Page 2552.) Ordered to engrossing and enrolling.

5. September 08, 2021

   In Senate. Concurrence in Assembly amendments pending.

6. September 08, 2021

   Read third time. Passed. (Ayes 80. Noes 0. Page 2909.) Ordered to the Senate.

7. August 31, 2021

   Read second time. Ordered to third reading.

8. August 30, 2021

   Read second time and amended. Ordered to second reading.

9. August 26, 2021

   From committee: Do pass as amended. (Ayes 12. Noes 0.) (August 26).

10. August 19, 2021

    August 19 set for first hearing. Placed on suspense file.

11. July 13, 2021

    From committee: Do pass and re-refer to Com. on APPR. (Ayes 11. Noes 0.) (July 13). Re-referred to Com. on APPR.

12. July 01, 2021

    From committee: Do pass and re-refer to Com. on JUD. (Ayes 11. Noes 0.) (July 1). Re-referred to Com. on JUD.

13. July 01, 2021

    Coauthors revised.

14. June 17, 2021

    From committee with author's amendments. Read second time and amended. Re-referred to Com. on P. & C.P.

15. June 14, 2021

    From committee with author's amendments. Read second time and amended. Re-referred to Com. on P. & C.P.

16. June 03, 2021

    Referred to Coms. on P. & C.P. and JUD.

17. May 28, 2021

    In Assembly. Read first time. Held at Desk.

18. May 28, 2021

    Read third time. Urgency clause adopted. Passed. (Ayes 38. Noes 0. Page 1277.) Ordered to the Assembly.

19. May 20, 2021

    Read second time. Ordered to third reading.

20. May 20, 2021

    From committee: Do pass. (Ayes 7. Noes 0. Page 1180.) (May 20).

21. May 14, 2021

    Set for hearing May 20.

22. March 22, 2021

    March 22 hearing: Placed on APPR suspense file.

23. March 16, 2021

    Set for hearing March 22.

24. March 11, 2021

    Read second time and amended. Re-referred to Com. on APPR.

25. March 10, 2021

    From committee: Do pass as amended and re-refer to Com. on APPR. (Ayes 11. Noes 0. Page 422.) (March 9).

26. March 01, 2021

    Set for hearing March 9.

27. January 28, 2021

    Referred to Com. on JUD.

28. December 08, 2020

    From printer. May be acted upon on or after January 7.

29. December 07, 2020

    Introduced. Read first time. To Com. on RLS. for assignment. To print.

Sponsors

• Thomas J. Umberg · Primary
• Buffy Wicks · Cosponsor

Votes

Subjects