BlackletterCalifornia law

PART 5. HEREDITARY DISEASES/CONGENITAL DEFECTS [124975. - 125292.10.]

Part 5 added by Stats. 1995, Ch. 415, Sec. 8.

§§ 124975–125292.10 · 128 sections

  1. CHAPTER 1. Genetic Prevention Services §§ 124975–125119.5 · 37 sections
    1. ARTICLE 1. Hereditary Disorders Act §§ 124975–124996 · 10 sections
      • § 124975 The Legislature hereby finds and declares that: (a) Each person in the State of California is entitled to health care commensurate with his or her health care…
      • § 124977 (a) It is the intent of the Legislature that, unless otherwise specified, the genetic disease testing program carried out pursuant to this chapter be fully…
      • § 124980 The director shall establish any regulations and standards for hereditary disorders programs as the director deems necessary to promote and protect the public…
      • § 124981 (a) A person shall not use the title of genetic counselor unless the person has applied for and obtained a license from the department. (b) The applicant for a…
      • § 124982 (a) The department shall issue a temporary genetic counselor license to a person to practice as a licensed genetic counselor who meets all of the following:…
      • § 124985 A violation of any of the provisions of the Hereditary Disorders Act (Section 27) or any of the regulations adopted pursuant to that act shall be punishable as…
      • § 124990 For the purposes of the Hereditary Disorders Act (Section 27), hereditary disorders programs shall include, but not be limited to, all antenatal, neonatal,…
      • § 124991 (a) (1) The Birth Defects Monitoring Program, within the State Department of Public Health, shall collect and store any umbilical cord blood samples it…
      • § 124995 The following programs shall comply with the regulations established pursuant to the Hereditary Disorders Act, as defined in Section 27: (a) The California…
      • § 124996 (a) The Genetic Disease Testing Fund is continued in existence as a special fund in the State Treasury. The department may charge a fee for any activities…
    2. ARTICLE 2. Newborn Screening §§ 125000–125002 · 3 sections
      • § 125000 (a) It is the policy of the State of California to make every effort to detect, as early as possible, phenylketonuria and other preventable heritable or…
      • § 125001 (a) The department shall establish a program for the development, provision, and evaluation of genetic disease testing, and may provide laboratory testing…
      • § 125002 (a) In order to align closely related programs and in order to facilitate research into the causes of, and treatment for, birth defects, the Birth Defects…
    3. ARTICLE 2.5. California Biobank Program §§ 125010–125012 · 3 sections
      • § 125010 Commencing July 1, 2026, and each July 1 thereafter, the State Department of Public Health shall generate a report that includes each of the following: (a) The…
      • § 125011 Commencing July 1, 2026, and each July 1 thereafter, a report generated pursuant to this article shall be provided to the Legislature until the department has…
      • § 125012 A report submitted to the Legislature pursuant to this article shall be submitted in compliance with Section 9795 of the Government Code.
    4. ARTICLE 3. Sickle Cell Anemia §§ 125025–125035 · 3 sections
      • § 125025 It is the policy of the State of California to make every effort to detect, as early as possible, sickle cell anemia, a heritable disorder that leads to…
      • § 125030 The department may require that a test be given for sickle cell anemia pursuant to Section 125025 to any identifiable segment of the population that the…
      • § 125035 The department is authorized to make grants or contracts for demonstration projects to determine the feasibility of alternate methods of testing for sickle…
    5. ARTICLE 4. Prenatal Testing §§ 125050–125119.5 · 18 sections
      • § 125050 The department shall administer a statewide program for the prenatal testing for genetic disorders and birth defects, including, but not limited to,…
      • § 125055 The department shall: (a) Establish criteria for eligibility for the prenatal testing program. Eligibility shall include definition of conditions and…
      • § 125060 The participation by any individual in the prenatal testing program shall be wholly voluntary and shall not be a prerequisite to eligibility for, or receipt…
      • § 125065 All prenatal diagnosis centers shall meet standards developed by the department and shall agree to accept patients from state funded or administered programs,…
      • § 125070 Laboratories licensed by the department shall not offer the maternal serum-alpha fetoprotein screening test for prenatal detection of neural tube defects of…
      • § 125080 A licensed physician and surgeon or other person engaged in the prenatal care of a pregnant woman or attending the woman at the time of delivery shall obtain…
      • § 125085 (a) As early as possible during prenatal care, a blood specimen obtained pursuant to Section 125080 shall be submitted to a clinical laboratory licensed by the…
      • § 125090 (a) Subdivision (a) of Section 125085 shall not be applicable if the licensed physician and surgeon or other person engaged in the prenatal care of a pregnant…
      • § 125092 The department, in consultation with the Office of AIDS and with other stakeholders, including, but not limited to, representatives of professional medical and…
      • § 125095 The department may adopt regulations as it determines are reasonably necessary for the implementation of the Maternal and Child Health Program Act (Section 27).
      • § 125100 (a) Clinical laboratories licensed by the department, approved public health laboratories, local health departments, physicians and surgeons, or other persons…
      • § 125105 (a) The blood specimen and test results pursuant to subdivision (b) of Section 125085 shall be confidential and shall not be disclosed, except as otherwise…
      • § 125107 (a) For purposes of this section, “prenatal care provider” means a licensed health care professional providing prenatal care within his or her lawful scope of…
      • § 125110 The Maternal and Child Health Program Act (Section 27) shall not apply if the pregnant woman objects to the test required by that act on the ground that the…
      • § 125118 (a) The State Department of Public Health shall develop guidelines for research involving the derivation or use of human embryonic stem cells in California.…
      • § 125119 (a) (1) All research projects involving the derivation or use of human embryonic stem cells shall be reviewed and approved by a stem cell research oversight…
      • § 125119.3 (a) Each stem cell research oversight committee that has reviewed human embryonic stem cell research pursuant to Section 125119 shall report to the department,…
      • § 125119.5 (a) The department shall at least annually review reports from stem cell research oversight committees, and may revise the guidelines developed pursuant to…
  2. CHAPTER 2. Genetic Disease Services §§ 125125–125286.35 · 37 sections
    1. ARTICLE 1. Genetically Handicapped Persons Program §§ 125125–125191 · 16 sections
      • § 125125 This article shall be known and may be cited as the Holden-Moscone-Garamendi Genetically Handicapped Persons Program.
      • § 125130 (a) The Director of Health Care Services shall establish and administer a program for the medical care of persons with genetically handicapping conditions,…
      • § 125135 As used in this article, “genetically handicapping condition” shall mean a disease that is accepted as being genetic in origin by the American Society of Human…
      • § 125140 The program established under this article shall include any or all of the following medical and social support services: (a) Initial intake and diagnostic…
      • § 125150 The director shall establish the rate structure for reimbursement of physicians and supportive services. The rates shall not be less than the amounts paid for…
      • § 125155 Reimbursement under this article shall not be made for any services that are available to the recipient under any other private, state, or federal programs or…
      • § 125155.1 (a) Any person found eligible for services under this article whose employer-sponsored health coverage is later terminated or any person who applied for…
      • § 125157 (a) The department may require a client under this article to apply to enroll or otherwise participate in any other state or federal program or other…
      • § 125160 The department shall receive and expend all funds made available to it by the federal government, the state, its political subdivisions or from other sources…
      • § 125166 (a) Commencing July 1, 2009, except as provided in subdivision (d), each client determined or redetermined by the department to be eligible for services…
      • § 125170 The department shall maintain sufficient, appropriate staff to carry out this article.
      • § 125175 The health care benefits and services specified in this article, to the extent that the benefits and services are neither provided under any other federal or…
      • § 125180 The department shall require all applicants to the program who may be eligible for cash grant public assistance or for Medi-Cal to apply for Medi-Cal…
      • § 125185 (a) (1) By July 1, 2016, or a subsequent date determined by the department, Genetically Handicapped Persons Program (GHPP) requests for authorization of…
      • § 125190 Notwithstanding any other law, the department is considered to be the purchaser, but not the dispenser or distributor, of blood factor products under the…
      • § 125191 (a) The department may enter into contracts with one or more manufacturers on a negotiated or bid basis as the purchaser, but not the dispenser or distributor,…
    2. ARTICLE 2. Long-Term Care for Degenerative Genetic Disease §§ 125200–125220 · 5 sections
      • § 125200 The Legislature finds and declares that there are many persons in California who are victims of chronic and degenerative genetic conditions, who experience a…
      • § 125205 The department and the State Department of Social Services shall, after consultation with the Genetically Handicapped Persons Program of the department and…
      • § 125210 For the purposes of this article, chronic and degenerative diseases shall include those conditions that are neurological and neuromuscular in origin, including…
      • § 125215 The department and the State Department of Social Services shall review regulations that currently provide disincentives to providers of in-home and…
      • § 125220 The actions undertaken pursuant to this article shall not impose additional state obligations or expenditures for the care of persons with chronic and…
    3. ARTICLE 3. Huntington’s Disease Research and Workshop Grants §§ 125225–125250 · 6 sections
      • § 125225 The Legislature hereby finds and declares that: (a) Huntington’s disease is a chronic progressive inherited disorder of the central nervous system. (b) The…
      • § 125230 The director may establish any rules or criteria for grants under this article as the director deems necessary.
      • § 125235 There is hereby created a Scientific Advisory Review Committee. The membership of the committee shall be composed of 11 members who shall be representatives…
      • § 125240 Pursuant to the rules or criteria as the director may deem necessary, the Scientific Advisory Review Committee shall review and recommend approval of grant…
      • § 125245 The director may make grants as follows: (a) Individual research grants to scientists and facilities residing in this state that have research experience with…
      • § 125250 Not more than 10 percent of any money appropriated for purposes of this article shall be utilized for the administration of this article.
    4. ARTICLE 4. Alzheimer’s Disease §§ 125275–125285 · 4 sections
      • § 125275 (a) The Legislature finds that Alzheimer’s disease, a devastating disease which destroys certain vital cells of the brain, affects more than 1,500,000…
      • § 125280 (a) Any postsecondary higher educational institution with a medical center may establish diagnostic and treatment centers for Alzheimer’s disease subject to…
      • § 125281 From funds appropriated to the department in the Budget Act of 2016 for these purposes, the department shall allocate funds to the diagnostic and treatment…
      • § 125285 The department shall provide public and professional education on Alzheimer’s disease to educate consumers, caregivers, and health care providers, and to…
    5. ARTICLE 5. Standards of Service for Providers of Blood Clotting Products for Home Use Act §§ 125286.10–125286.35 · 6 sections
      • § 125286.10 This article shall be known, and may be cited, as the Standards of Service for Providers of Blood Clotting Products for Home Use Act.
      • § 125286.15 The Legislature hereby finds and declares all of the following: (a) Hemophilia is a rare, hereditary, bleeding disorder affecting at least 4,000 persons in…
      • § 125286.20 Unless the context otherwise requires, the following definitions shall apply for purposes of this article: (a) “Assay” means the amount of a particular…
      • § 125286.25 Each provider of blood clotting products for home use shall meet all of the following requirements: (a) Have sufficient knowledge and understanding of bleeding…
      • § 125286.30 The California State Board of Pharmacy shall administer and enforce this article.
      • § 125286.35 Nothing in this article shall apply to either hospital pharmacies or health system pharmacies that dispense blood clotting products due only to emergency,…
  3. CHAPTER 3. California Stem Cell Research and Cures Bond Act §§ 125290.10–125292.10 · 54 sections
    1. ARTICLE 1. California Stem Cell Research and Cures Act §§ 125290.10–125290.80 · 21 sections
      • § 125290.10 General—Independent Citizen’s Oversight Committee (ICOC) This chapter implements Article XXXV of the California Constitution, which established the California…
      • § 125290.15 Creation of the ICOC There is hereby created the Independent Citizen’s Oversight Committee, hereinafter, the ICOC, which shall govern the institute and is…
      • § 125290.20 ICOC Membership; Appointments; Terms of Office (a) ICOC Membership The ICOC shall have 35 members, appointed as follows: (1) The Chancellors of the University…
      • § 125290.25 Majority Vote of Quorum Actions of the ICOC may be taken only by a majority vote of a quorum of the ICOC.
      • § 125290.30 Public and Financial Accountability Standards (a) Annual Public Report The institute shall issue an annual report to the public which sets forth its…
      • § 125290.35 Medical and Scientific Accountability Standards (a) Medical Standards In order to avoid duplication or conflicts in technical standards for scientific and…
      • § 125290.40 ICOC Functions The ICOC shall perform the following functions: (a) Oversee the operations of the institute. (b) Develop annual and long-term strategic research…
      • § 125290.45 ICOC Operations (a) Legal Actions and Liability (1) The institute may sue and be sued. (2) Based upon ICOC standards, institute grantees shall indemnify or…
      • § 125290.50 Scientific and Medical Working Groups—General (a) The institute shall have, and there is hereby established, four separate scientific and medical working…
      • § 125290.55 Scientific and Medical Accountability Standards Working Group (a) Membership The Scientific and Medical Accountability Standards Working Group shall have 19…
      • § 125290.60 Scientific and Medical Research Funding Working Group (a) Membership The Scientific and Medical Research Funding Working Group shall have at least 23 members…
      • § 125290.65 Scientific and Medical Facilities Working Group (a) Membership The Scientific and Medical Research Facilities Working Group shall have 11 members as follows:…
      • § 125290.70 Appropriation and Allocation of Funding (a) Moneys in the California Stem Cell Research and Cures Fund shall be allocated as follows: (1) (A) No less than 97…
      • § 125290.70.5 Appropriation and Allocation of Funding (a) Moneys in the California Stem Cell Research and Cures Fund shall be allocated as follows: (1) (A) No less than 95.5…
      • § 125290.71 Under the guidance of the ICOC, the institute shall, by January 31, 2012, create a transition plan addressing the expiration of current bond funding. A copy of…
      • § 125290.72 Expand Alpha Stem Cell Clinic Program and Establish Community Care Centers of Excellence Program (a) The institute shall expand the Alpha Stem Cell Clinic…
      • § 125290.73 Scientific and Medical Training and Fellowship Programs (a) The institute shall establish training and fellowship programs. The goal of the training and…
      • § 125290.74 Shared Research Laboratory Program (a) The institute shall reestablish a Shared Research Laboratory Program to provide funding to academic and nonprofit…
      • § 125290.75 Treatments and Cures Accessibility and Affordability Working Group (a) Membership The Treatments and Cures Accessibility and Affordability Working Group shall…
      • § 125290.76 Advisory Task Forces (a) Membership The chairperson and the president may appoint one or more advisory task forces to provide expert guidance to address…
      • § 125290.80 The intellectual property standards that the ICOC develops shall include: (a) A requirement that each grantee or the exclusive licensee of the grantee submit a…
    2. ARTICLE 2. California Stem Cell Research and Cures Bond Act of 2004 §§ 125291.10–125291.85 · 16 sections
      • § 125291.10 This article shall be known, and may be cited, as the California Stem Cell Research and Cures Bond Act of 2004.
      • § 125291.15 As used in this article, the California Stem Cell Research and Cures Bond Act of 2004, the following terms have the following meaning: (a) “Act” means the…
      • § 125291.20 (a) Notwithstanding Section 13340 of the Government Code or any other provision of law, moneys in the fund are appropriated without regard to fiscal years to…
      • § 125291.25 The proceeds of interim debt and bonds issued and sold pursuant to this article shall be deposited in the State Treasury to the credit of the California Stem…
      • § 125291.30 Bonds in the total amount of three billion dollars ($3,000,000,000), not including the amount of any refunding bonds issued in accordance with Section…
      • § 125291.35 The bonds authorized by this article shall be prepared, executed, issued, sold, paid, and redeemed as provided in the State General Obligation Bond Law…
      • § 125291.40 (a) Solely for the purpose of authorizing the issuance and sale, pursuant to the State General Obligation Bond Law, of the bonds and interim debt authorized by…
      • § 125291.45 (a) The committee shall determine whether or not it is necessary or desirable to issue bonds authorized pursuant to this article in order to carry out the…
      • § 125291.50 There shall be collected each year and in the same manner and at the same time as other state revenue is collected, in addition to the ordinary revenues of the…
      • § 125291.55 Notwithstanding Section 13340 of the Government Code, there is hereby appropriated from the General Fund in the State Treasury, for the purposes of this…
      • § 125291.60 For the purpose of carrying out this article, the Director of Finance may authorize the withdrawal from the General Fund of an amount or amounts, not to exceed…
      • § 125291.65 The institute may request the Pooled Money Investment Board to make a loan from the Pooled Money Investment Account in accordance with Section 16312 of the…
      • § 125291.70 All money deposited in the fund that is derived from premium and accrued interest on bonds sold shall be reserved in the fund and shall be available for…
      • § 125291.75 The bonds issued and sold pursuant to this article may be refunded in accordance with Article 6 (commencing with Section 16780) of Chapter 4 of Part 3 of…
      • § 125291.80 Notwithstanding any provision of this article or the State General Obligation Bond Law, if the Treasurer sells bonds pursuant to this article that include a…
      • § 125291.85 Inasmuch as the proceeds from the sale of bonds authorized by this article are not “proceeds of taxes” as that term is used in Article XIIIB of the California…
    3. ARTICLE 2.5. California Stem Cell Research, Treatments, and Cures Bond Act of 2020 §§ 125291.90–125291.165 · 16 sections
      • § 125291.90 This article shall be known, and may be cited, as the California Stem Cell Research, Treatments, and Cures Bond Act of 2020.
      • § 125291.95 As used in this article, the following terms have the following meanings: (a) “Act” means the California Stem Cell Research and Cures Act constituting this…
      • § 125291.100 (a) Notwithstanding Section 13340 of the Government Code or any other provision of law, moneys in the fund are appropriated without regard to fiscal years to…
      • § 125291.105 The proceeds of interim debt and bonds issued and sold pursuant to this article shall be deposited in the State Treasury to the credit of the California Stem…
      • § 125291.110 Bonds in the total amount of five billion five hundred million dollars ($5,500,000,000), not including the amount of any refunding bonds issued in accordance…
      • § 125291.115 The bonds authorized by this article shall be prepared, executed, issued, sold, paid, and redeemed as provided in the State General Obligation Bond Law…
      • § 125291.120 (a) Solely for the purpose of authorizing the issuance and sale, pursuant to the State General Obligation Bond Law (Chapter 4 (commencing with Section 16720)…
      • § 125291.125 (a) The committee shall determine whether or not it is necessary or desirable to issue bonds authorized pursuant to this article in order to carry out the…
      • § 125291.130 There shall be collected each year and in the same manner and at the same time as other state revenue is collected, in addition to the ordinary revenues of the…
      • § 125291.135 Notwithstanding Section 13340 of the Government Code, there is hereby appropriated from the General Fund in the State Treasury, for the purposes of this…
      • § 125291.140 For purposes of carrying out this article, the Director of Finance may authorize the withdrawal from the General Fund of an amount or amounts, not to exceed…
      • § 125291.145 The institute may request the Pooled Money Investment Board to make a loan from the Pooled Money Investment Account in accordance with Section 16312 of the…
      • § 125291.150 All money deposited in the fund that is derived from premium and accrued interest on bonds sold shall be reserved in the fund and shall be available for…
      • § 125291.155 The bonds issued and sold pursuant to this article may be refunded in accordance with Article 6 (commencing with Section 16780) of Chapter 4 of Part 3 of…
      • § 125291.160 Notwithstanding any provision of this article or the State General Obligation Bond Law (Chapter 4 (commencing with Section 16720) of Part 3 of Division 4 of…
      • § 125291.165 The proceeds from the sale of bonds authorized by this article are not “proceeds of taxes” as that term is used in Article XIIIB of the California…
    4. ARTICLE 3. Definitions § 125292.10 · 1 section
      • § 125292.10 Definitions As used in this chapter and in Article XXXV of the California Constitution, the following terms have the following meanings: (a) “Act” means the…