Genome Statute and Legislation Database

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Coverage must include testing and any subsequent treatment based on the results of the test for people with a significant risk of contracting cancer. Died.

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. Biometric information is defined to include DNA. Carries over to 2022.

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by employers and insurers. Measure failed.

Prohibits hiring parties from subjecting a model to harassment based on various factors, including predisposing genetic characteristics. Died.

This bill establishes a genetics advisory council to study various topics, including the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

Directs the commissioner of education to conduct a study on the use of biometric identifying technology; prohibits the use of biometric identifying technology in schools until July 1, 2022, or until the commissioner authorizes such purchase or utilization. Biometric information is defined to include a DNA sequence. 12/22/2020 Signed by the Governor. Effective immediately.

Prohibits the distribution of consumers' DNA profiles submitted to direct-to-consumer genetic testing companies. Requires companies to provide a copy of their privacy policy to any consumer that submits a DNA sample and provides for civil penalties for violations of these provisions. Died.

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. Carries over to 2022.

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers, if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on a insured, applicant or family member of insured or applicant. Measure failed.

Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security the information. Personal information is defined to include biometric information such as DNA. Died.

An employer or labor organization may not discriminate against employees, applicants or members based on a predisposing genetic characteristic. An employer or employment agency may not print or circulate materials or use a form of application that discriminate based on a predisposing genetic characteristic. Additional provisions apply to employers, labor organizations, employment agencies, and licensing agencies. A genetic test may be required as a condition of employment if directly related to possible increased risk of disease in the work environment or, with informed consent, for workers compensation and to determine susceptibility to toxins found in the workplace environment.

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by insurers and employers. Measure failed.

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex; requires reporting certain information relating to the collection of data, and provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

Amends the public health law, in relation to authorizing human research in compliance with federal law. 9/13/2019 Signed by the Governor.

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

This bill requires health insurers to cover genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

No insurer may request or require an individual proposed for insurance coverage to submit to a genetic test without prior written informed consent. Further disclosures require additional consent. If an adverse underwriting decision is based on the results of a genetic test, the insurer must notify the individual. No insurer who lawfully possesses information derived from a genetic test on a biological sample may incorporate the information into the record of a non-consenting individual. Penalties for violations are set forth.

Requires health insurance policies to cover comprehensive screening for ovarian cancer. Additional coverage for computed tomography, barium enema X-rays, magnetic resonance imaging (MRI), positron emission tomography, laparoscopy, colonoscopy and biopsy if a person is at increased risk for ovarian cancer due to specified factors, including positive genetic testing. Died.

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex. Requires reporting certain information relating to the collection of data. Provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Carries over to 2022.

This bill prohibits group or blanket policies that cover 51 or more employees for hospital, medical, major medical, or similar type comprehensive coverage from excluding members or dependents or establishing rates based on predisposing genetic characteristics. The bill also prohibits health insurers from requiring or using tests for or information about predisposing genetic characteristics for underwriting. The same restrictions are imposed upon hospital service corporations, health services corporation and medical expense indemnity corporations covering 51 or more employees. Measure failed.

Prohibits an employer, licensing agency, employment agency, or labor organization from subjecting an individual to discriminatory harassment based on various factors, including predisposing genetic characteristics. Prohibits subjecting domestic workers to unwelcome harassment based on genetic information. Died.

Requires policies of hospital, surgical or medical care to provide coverage for ovarian cancer screening. These policies also must provide coverage for specific services if a person is believed to be at increased risk of ovarian cancer to due to family history, personal history or positive genetic testing. Died.

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work. Protected class includes predisposing genetic characteristic. 4/3/2020 Signed by the Governor.

Establishes a personal information bill of rights. Declares the right of all New Yorkers to have their personal information, including DNA, protected. Died.

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on a insured, applicant or family member of insured or applicant. Measure failed.

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

Insurers or corporations delivering group or blanket health policies that provide hospital, surgical or medical expense coverage may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Individual and group or blanket health insurance policies or contracts may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis.

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling. Participation in the program is voluntary, and all information is confidential. Died.

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

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. Died.

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

This bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. Died.

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.