Genome Statute and Legislation Database

Amends the provision pertaining to use of stored blood specimens. Removes language permitting the Division of Public Health use of specimens for (1) quality assurance or performance improvement activities, including pilot studies, when a new disorder is being considered for addition to the panel; or (2) any other purpose authorized by law. research use in population based studies of de-identified specimens is permitted with parental consent. However, an amendment to the existing statute requires the destruction of blood specimens after screening and testing are complete. Signed by the Governor on 9/15/2021. Effective upon Governor's signature.

Seeks to provide consumers with critical information about how their personal information is being used by data brokers. Data brokers must register with the Consumer Protection Unit of the Department of Justice and answer questions regarding their use of personal information that would be published online to inform consumers. Data brokers are required annually to complete an electronic form designated by the Director of Consumer Protection. Data brokers must report on the form the types of consumer data, including genetic data, collected directly from consumers and from consumers� devices. Carries over to 2022.

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 6/29/21 Approved by the Governor. Effective 7/1/2021.

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021.

Creates the Florida privacy Protection Act. Requires collectors to provide notice to consumers about data collection and selling practices. Provides consumers right to request data be disclosed, deleted, or corrected and to opt-in or opt-out of sale or sharing of such data. Provides nondiscrimination measures, methods for requesting data and opting-in or opting-out of sale or sharing of such data, private cause of action, enforcement, and jurisdiction. Personal information is defined to include biometric information such as DNA. 4/30/21 Died in returning messages.

This bill prohibits DNA analysis and disclosure of DNA analysis results without authorization; prohibits the collection or retention of a DNA sample of another person without authorization for specified purposes; prohibits specified DNA analysis and disclosure of DNA analysis results without authorization, etc.

Creates the Florida privacy Protection Act. Requires certain businesses that collect consumer personal information to provide certain information to the consumer. Provides that consumers have the right to direct certain businesses not to sell their personal information. Prohibits businesses from selling the personal information of consumers younger than a specified age without express authorization from the consumer or the consumer�s parent or guardian under certain circumstances. Authorizes consumers to initiate civil actions for violations. Personal information is defined to include biometric information such as DNA. 4/28/21 Read 2nd time. Substituted CS/CS/CS/HB 969 (Died in returning Messages). Laid on Table - SJ 753.

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 4/21/2021 Senate Laid on Table, companion bill passed, see HB 241 (Ch. 2021-199) SJ 547.

Prohibits life and long-term care insurers that receive information from genetic testing from using the information for any non-therapeutic purpose, including, but not limited to, canceling, limiting, or denying coverage or establishing differentials in premium rates. These insurers also may not require or solicit genetic information, use genetic testing results, or consider a person's decisions or actions related to genetic testing in any manner for any insurance purpose. Carries over to 2022 session.

Prohibits discrimination in employment and public accomodation based on an individual's invasive medical test status. Invasive medical test status is defined to include a medical test or screening that requires a sample of an individual's genetic material. Carries over to 2022 session.

Requires every group policy of accident and health or sickness insurance and every individual or group hospital or medical service plan contract to provide coverage for screening to determine whether counseling and testing related to the BRCAl or BRCA2 genetic mutation is indicated and genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Carries over to 2022 session.

Amends the definition of personal information for the purpose of applying modern security breach of personal information law. Personal information is defined as an identifier in combination with one or more specified data elements. Specified data elements include a deoxyribonucleic profile. Carries over to 2022 session.

Requires every group policy of accident and health or sickness insurance and every individual or group hospital or medical service plan contract to provide coverage for screening to determine whether counseling and testing related to the BRCAl or BRCA2 genetic mutation is indicated and genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Carries over to 2022 session.

An individual or group health care service plan contract that is issued, amended, delivered, or renewed on or after January 1, 2022 may not require prior authorization for biomarker testing for an insured with advanced or metastatic stage 3 or 4 cancer, nor shall prior authorization be required for biomarker testing of cancer progression or recurrence in the insured with advanced or metastatic stage 3 or 4 cancer. Biomarker testing is defined as analysis of tissue blood or fluid specimen for the presence of a biomarker. Biomarker testing includes, but not limited to, single-analyte tests, multiplex tests, and partial or whole genome sequencing. 7/30/21 Governor approved. Effective 1/1/2022.

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden. 8/27/21 Approved by the Governor. Effective 1/1/2022.

Amends the Personal Information Protection Act. Provides that individuals and entities have intellectual property rights in their digital identity assets. Provides for the payment of royalties to individuals and entities for access, for the purpose of commercial advertising, to their digital assets. Digital assets include, but are not limited to, information accumulated regarding an individual's or entity's personal information. Personal information includes medical history such as RNA and DNA profiles and genetic history. Carries over to 2022 session.

A participating healthcare provider or participating care coordinators may not refuse to provide health care services to a member of the Health Iowa Program on the basis of various characteristics, including genetic information. The board for the Health Iowa Program must adopt rules to promote nondiscrimination with respect to members and health care providers on the basis of various factors, including genetic information. Carries over to 2022 session.

Establishes health-status eligibility rules for health benefit plans in any market. Prohibits requiring a greater premium or contribution, or different benefits coverage, on the basis of any health status-related factor, including genetic information. Prohibits pre-existing condition exclusions. Prohibits adjustment of premium or contribution amounts for group health plans on the basis of genetic information. Died.

Requires a health facility that provides perinatal care to provide each patient, upon admission or as soon thereafter as reasonably practical, written information regarding the patient's rights, including the right to be free from discrimination on the basis of genetic information. Died.

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. Died.

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. 6/11/21 Signed by the Governor. Becomes Act No. 242. Effective August 1, 2021.

Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. 6/1/21 Signed by the Governor. Becomes Act No. 45. Effective 1/1/2022.

Requires any health coverage plan renewed, delivered or issued for delivery in Louisiana to provide coverage for genetic or molecular testing for cancer including but not limited to tumor mutation testing, next generation sequencing, hereditary germline mutation testing, pharmacogenomic testing, whole exome and genome sequencing, and biomarker testing. 6/1/21 Signed by the Governor. Becomes Act No. 43. Effective 1/1/2022.

In the absence of a medical diagnosis of a disease, disorder or syndrome related to genetic information, a health insurer, life insurer or long-term care insurer may not cancel, limit or deny coverage or establish differentials in premium rates based on such genetic information. A health insurer, life insurer or long-term care insurer may not request, require, purchase or otherwise solicit genetic information; use genetic test results; or consider an individual's decisions or actions relating to genetic testing in any manner for any insurance purpose. 6/10/2021 Reports Read. On motion by Senator Sanborn of Cumberland the Majority Ought Not to Pass. Report accepted. In concurrence. Placed in Legislative Files. Died.

Establishes annual registration of data brokers. Requires data brokers to develop, implement and maintain a comprehensive information security program to protect personally identifiable information. Personally identifiable information includes genetic identifiers. Ought Not to Pass Pursuant To Joint Rule 310, Jun 2, 2021.

Establishes consumer rights with respect to personal information collected by a business. Personal information includes biometric information. Biometric information is defined to include deoxyribonucleic acid. Died Between Houses, Jun 2, 2021.

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information. 6/8/21 Signed by the Governor. Effective 90 days after adjournment (March 30, 2021).

Requires the Maryland Department of Health to do the following: (1) by January 1, 2023, develop gene sequence and customer screening guidelines for gene synthesis providers and manufacturers of gene synthesis equipment that include certain requirements; (2) develop a process to certify that gene synthesis providers and manufacturers of gene synthesis equipment are in compliance with the guidelines requiring, on or after January 1, 2024, the Department to certify certain gene synthesis providers and equipment manufacturers. Gene synthesis provider does not include a research scientist making gene synthesis products for the research scientist's own use or for use by another research scientist. In the House - Withdrawn by Sponsor. Died.

Amends statute requiring a business that maintains personal information of an individual residing in the State to implement and maintain certain security procedures and practices. The bill adds the following to the definition of personal information: genetic information with respect to an individual, including the genetic sample of an individual; the genetic test of an individual; the genetic test of an individual's family member; the manifestation of a disease or disorder in a family member of an individual; any request for and receipt of genetic counseling, or genetic education; and any information derived from genetic information with respect to an individual. In the Senate - First Reading Finance. Died.

Requires certain private entities in possession of biometric identifiers or biometric information to develop a written policy, made available to the public, establishing a certain retention schedule and guidelines for permanently destroying biometric identifiers and biometric information. Biometric identifier is defined to includes a genetic print. The bill defines confidential and sensitive to include a genetic marker and genetic testing information. In the House - Withdrawn by Sponsor. Died.

This bill establishes that a certain forensic genetic genealogical DNA analysis and search may not be initiated without certifying certain information before a court and obtaining a certain authorization from the court; prohibits certain biological samples subjected to certain forensic genetic genealogical profile analysis to be used to determine certain information about a certain donor; requires the Department of Public Safety and Correctional Services to produce a certain annual report; etc.

Alters the definition of "practice pharmacy" to include the ordering and administering of certain laboratory tests. Requires the State Board of Pharmacy, on or before January 1, 2022, to adopt regulations authorizing a pharmacist to order and administer laboratory tests, without a written, oral or electronically transmitted prescription from an authorized prescriber that measure biomarkers, including deoxyribonucleic acid.

Amends statute requiring a business that maintains personal information of an individual residing in the State to implement and maintain certain security procedures and practices. The bill adds the following to the definition of personal information: genetic information with respect to an individual, including the genetic sample of an individual; the genetic test of an individual; the genetic test of an individual's family member; the manifestation of a disease or disorder in a family member of an individual; any request for and receipt of genetic counseling, or genetic education; and any information derived from genetic information with respect to an individual. In the Senate - Hearing 2/10 at 1:00 p.m. Died.

Requires certain private entities in possession of biometric identifiers or biometric information to develop a written policy, made available to the public, establishing a certain retention schedule and guidelines for permanently destroying biometric identifiers and biometric information. Biometric identifier is defined to includes a genetic print. The bill defines confidential and sensitive to include a genetic marker and genetic testing information. In the Senate - Hearing 1/27 at 1:00 p.m. Died.

Amends the statute requiring certain units of State government to employ reasonable security procedures and practices. Proposed changes to the law include altering the definition of biometric information by removing the term genetic print and adding an individual's DNA to the definition. In the House - Hearing 3/31 at 1:30 p.m. Died.

Alters the definition of "practice pharmacy" to include the ordering and administering of certain laboratory tests. Requires the State Board of Pharmacy, on or before January 1, 2022, to adopt regulations authorizing a pharmacist to order and administer laboratory tests, without a written, oral or electronically transmitted prescription from an authorized prescriber that measure biomarkers, including deoxyribonucleic acid. In the Senate - Hearing 3/02 at 1:00 p.m. Died.

Requires certain businesses that collect a consumer's personal information to provide certain clear and conspicuous notices to the consumer at or before the point of collection. The bill defines biometric information to include an individual's DNA. In the Senate - First Reading Senate Rules. Died.

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Protected characteristics includes genetic information. Carries over 2022.

Establishes protections relative to the processing of personal data and the free movement of personal data. Prohibits the processing of genetic data or biometric data for the purpose of uniquely identifying a natural person with certain exceptions. Carries over to 2022.

Requires certain insurers to provide benefits on a nondiscriminatory basis for the diagnosis and treatment of Alfi�s syndrome in individuals. Diagnosis of Alfi's Syndrome includes genetic testing. Carries over to 2022.

Requires certain insurers to provide coverage for screening breast ultrasound or screening breast magnetic resonance imaging examination if the patient has additional risk factors for breast cancer including, but not limited to, family history and positive genetic testing. Carries over to 2022.

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

Establishes requirements for specified persons, partnerships or corporations that maintain high-risk information systems. A high-risk information system involves the personal information of a significant numbers of consumers regarding various characteristics, including genetic data. Carries over to 2022.

Requires the commission on workplace harassment and sexual assault in the legislature to research and develop model workplace harassment policies for consideration and use by the Senate and House of Representatives. The model policies must address identity-based harassment, including harassment based on genetic information. Carries over to 2022.

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include. Carries over to 2022.

Amends statute to protect personal information under the security breach law. Adds genetic information to the scope of information covered under the law. Referred to the Senate committee on Advanced Information Technology, the Internet and Cybersecurity. Carries over to 2022.

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.