Genome Statute and Legislation Database

Enacts the NY privacy act to require companies to disclose their methods of de-identifying personal information such as biometric information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared. Biometric information is defined to include DNA. 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.

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.

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 based on various characteristics such as genetic information in the following areas: housing; employment; lending; education; public accommodation; insurance; and jury service. Carries over to 2022.

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making pharmacogenomics available statewide. Carries over to 2022 session.

Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/30/2021 Deferred for summer study in Health Subcommittee.

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. 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.

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 certain rights of perinatal care patients, including the right to receive care and treatment free from discrimination based on characteristics such as genetic information. Carries over to 2022.

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.
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Establishes rights of perinatal care patients, including the right to be free from discriminating based on genetic information. 3/31/2021 Assigned to General Subcommittee of Senate Health and Welfare Committee. Carries over to 2022.

Requires companies to file a biennial climate report. The requirements for the form and content of the climate report at a minimum must include: (i) Company climate surveys to be filled out anonymously by employees, which are designed to assess such company's workplace environment including, but not limited to, pay equity, sexual harassment and discrimination based on an individual's age, race, creed, color, national origin, sexual orientation, military status, sex, disability, predisposing genetic characteristics, familial status, marital status or domestic violence victim status. 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 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.

A person who negligently or willfully discloses genetic test results in an individuals medical records who is applying for or enrolled in a health care service plan, except with written authorization in the format specified, is subject to fines as set forth in the statutes.

An individual's health care information, including information about individual cells or their components or genetic information, is confidential. Authorization is required to disclose this information other than to the individual by the health care practitioner or facility with some exceptions. The definition of health care information excludes information that protects the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.

No individual or his/her family member may be required to undergo genetic testing as a condition of doing business with another person. Genetic testing may not be performed on any individual or anywhere on any resident of the state based on bodily materials obtained within the state without prior written and informed consent with some exceptions. Additional provisions address disclosure of results. The statutes establish a right to civil action by aggrieved individuals.

A policy of insurance may not be underwritten or conditioned on a requirement to undergo genetic testing or the results of genetic testing. Civil and criminal penalties are set forth for violations.

Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose.

An expense-incurred hospital, medical, surgical policy or certificate or health care corporation may not require an insured or his or her dependent or an asymptomatic applicant or his or her asymptomatic dependent to undergo a genetic test or disclose whether a genetic test has been conducted, the results of a genetic test or genetic information.

Any individual, corporation, association, partnership, insurance support organization, fraternal benefit society, insurance producer, third-party administrator, self-insurer, or any other legal entity engaged in the business of insurance that issues accident and sickness insurance policies or administers a health insurance plan may not deny or condition the issuance or effectiveness of a policy on a pre-existing condition or genetic information. These entities also may not discriminate with respect to pricing a policy or certificate, including premiums, based on genetic information. A violation is an unfair and deceptive act or practice. An insurer also may not request or require a genetic test with an exception for research. An insurer may request a genetic test if the request is pursuant to research that complies with the Common Rule and other specified criteria are met.

The statutes require carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information.

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information.

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

A person, firm, corporation, or the state of Washington, its political subdivisions, or municipal corporations may not require any employee or prospective employee to submit genetic information or submit to screening for genetic information as a condition of employment or continued employment.

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

No insurer providing accident and health or sickness insurance coverage or extended health_insurance_coverage, mutual benefit society, fraternal benefit society, or health maintenance organization may use an individual's or a family member's genetic information or a request for genetic services to (1) deny or limit any coverage or (2) establish eligibility, continuation, enrollment, or premium payment. These entities may not request or require collection or disclosure of genetic information of an individual or family member or disclose genetic information without written consent.

An employer may not use genetic information or genetic test results of an employee or prospective employee to distinguish between, discriminate against, or restrict any right or benefit otherwise due or available to such employee or prospective employee. Exceptions are provided for the underwriting of group life, disability income and long-term care insurance, actions required by law or regulation, action taken with written permission of an employee or prospective employee, and the use of genetic information when it is directly related to job performance and assigned responsibilities.

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

An insurer that offers health benefit plan coverage in the small group, large group, or association market may not establish rules for eligibility based on health status-related factors, including genetic information. Health insurers offering individual health benefit plan coverage may not impose a pre-existing conditions exclusion based on genetic information in the absence of a diagnosis.

Under the Small Employer Health Insurance Availability Act, health status-related factor is defined to include genetic information and pre-existing condition is defined to exclude genetic information in the absence of a diagnosis.

Pre-existing conditions and health status-related factors are defined to include genetic information with respect to multiple-employer welfare arrangements and the health insurance portability and accountability act.

An insurance institution, agent or insurance support organization that collects, uses or discloses medical record information must have written policies, standards and procedures for the management, transfer and security of medical record information, including additional protection against unauthorized disclosure of sensitive health information such as information regarding genetic testing and the fact that an individual has undergone a genetic test.

A health maintenance organization, company, insurance broker, medical service corporation, non-profit hospital service corporation or preferred provider organization may not cancel, refuse to issue or renew, or make any distinction or discrimination in the amount of payment of premium or rates charged, in the length of coverage or in any of the terms and conditions based on genetic information. These entities may not require genetic tests or private genetic information.

The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information.

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

An insurer (except a life insurance company) may not obtain genetic screening or testing results without a separate written consent from an individual, but these entities are not liable for inadvertent receipt of results without consent.

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research.

A carrier that issues individual or group hospital, health or dental insurance and the Dirigo Health Self-administered Plan may not discriminate against an individual or eligible dependent on the basis of genetic information, the refusal to submit to a genetic test, refusal to make available the results of a genetic test, or based on the receipt of a genetic test or genetic counseling. A carrier may request, but not require, that an individual undergo a genetic test if the request is made pursuant to research that complies with the Common Rule and other specified criteria are met. Life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurers or an annuity may not (1) discriminate unfairly, which includes the use of genetic test results in a manner that is not reasonably related to anticipated claims experience, or (2) request, require, purchase or use information obtained from a direct-to-consumer genetic test without consent of the individual tested.

No employer, labor organization, employment agency, or licensing agency may (1) solicit, require or administer genetic testing, or (2) affect the terms, conditions, or privileges of, or terminate employment, membership, or licensure based on genetic testing. A person may not sell or provide to these entities any genetic testing relating to an existing or prospective employee, member or licensee unless for the purpose of workers compensation or biomonitoring of workplace toxins and with informed consent. The statutes establish a right to civil action by aggrieved individuals.

Employers or labor organizations may not use information about genetic testing, genetic counseling, or genetic disease for purposes specified. Civil and criminal penalties are set forth for violations.

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.

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

For purposes of distinguishing between or discriminating against or restricting any right or benefit otherwise due or available to an employee or prospective employee other than in connection with the determination of insurance coverage or benefits an employer may not (1) seek to obtain or use a genetic test or genetic information of the employee or the prospective employee, or (2) require a genetic test of or require genetic information from the employee or prospective employee.

Disability insurers covering hospital, medical and surgical expenses may not fail or refuse to accept an application, fail or refuse to issue insurance, cancel or refuse to renew insurance, charge a higher rate or premium, offer or provide different terms, conditions or benefits, or place a limitation on coverage based on genetic characteristics that may be associated with disability in a person of that persons offspring. These insurers also may not seek information about a persons genetic characteristics for non-therapeutic purposes. Specific penalties are set forth for violations. Life and disability insurers may not discriminate based solely on the fact that the person to be insured carries a gene that may be associated with disability in that person or the persons offspring, but which causes no adverse effects in the carrier, including but not limited to Tay-Sachs trait, sickle cell trait, thalassemia trait, and X-linked hemophilia trait.

Insurers, nonprofit health service plans and health maintenance organizations, may seek verification from health care providers that offer wellness programs about health factors that make it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Health factors are defined to include genetic information.

A health benefit plan that is offered by a carrier or an approved health plan offered to a small employer and plans subject to the Health Insurance Portability Act may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A group health plan and a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based a health status-related factor, including genetic information. A group health benefits plan or a health insurance issuer that offers group health_insurance_coverage in connection with a group health benefits plan from adjusting premiums or contribution amounts for the group covered under the plan on the basis of genetic information. Under the Small Group Rate and Renewability Act, provisions allowing a carrier to use health status in establishing the amount an employer may be charged for coverage under a group health plan exclude genetic information from the definition of health status.

A health care provider, an individual who assists a health care provider in the delivery of health care, or an agent and employee of a health care provider may not disclose health care information, including a patient's deoxyribonucleic acid and identified sequence of chemical base pairs, about a patient to any other person without the patient's written authorization. A health care provider may disclose health care information to researchers if the health care provider or health care facility obtains the informed consent for the use of the patient's health care information for research purposes.