Genome Statute and Legislation Database

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 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.

Establishes a Hate Crime Task Force. The task force will issue reports and publications in conjunction with the Division on Human Rights to combat discrimination based on a variety of factors, including genetic information. 4/20/2017 Signed by the Governor Chapter 55.

Establishes a Hate Crime Task Force. The task force will issue reports and publications in conjunction with the Division on Human Rights to combat discrimination based on a variety of factors, including genetic predisposition status. 04/20/2017 Signed by the Governor Chapter 55.

Establishes a parental bill of rights. Requirements include parental consent in writing before any record of a minor child's blood or DNA is made, shared, or stored, unless such blood or DNA is otherwise required by law or court order. Died.

Establishes a parental bill of rights. Requirements include parental consent in writing before any record of a minor child's blood or DNA is made, shared, or stored, unless such blood or DNA is otherwise required by law or court order. Died.

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.

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

Establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

Establishes a pharmacogenetics task force. Died.

Establishes a pharmacogenetics task force. Died.

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 2/23/2021 Committee recommended measure be held for further study. Died.

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 4/1/2021 Committee recommended measure be held for further study. Died.

Establishes a task force to require a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of such disease. Died.

Establishes an eleven member genetics advisory council. Died.

Establishes and individual's property right to his or her genetic information and DNA sample, except as expressly otherwise provided in statute. Requires consent to acquire, retain, or disclose a person's genetic information or DNA sample. 5/2/2018 Refer to Interim Study, MA, VV.

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 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 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 consumer protections pertaining to the collection, possession, use, disclosure and retention of biometric identifiers. Biometric information is defined to include genetic markers and genetic testing information. Died.

Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died.

Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died.

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.

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.

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.