Genome Statute and Legislation Database

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.