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Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Sort descending Primary Link Topic(s) Bill Status Summary
New York Research Statute

The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

New York Health Insurance Coverage Died

The bill requires accident and health insurance policies to cover the cost of genetic testing for people with a family history of cancer when the attending physician determines the person has a significant risk of cancer. Died.

New York Privacy Pending

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.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

New York Privacy Died

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.

New York Research Enacted

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

New York Employment Nondiscrimination Died

Prohibits clients and modeling agencies from subjecting a model to harassment based on various characteristics, including predisposing genetic characteristics, where such harassment has the purpose or effect of unreasonably interfering with an individual's provision of modeling services by creating an intimidating, hostile, or offensive environment. Died.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

New York Research Pending

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.

New York Other Lines of Insurance Nondiscrimination 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 an insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Requires every personal information recipient to protect the security and integrity of all personal information in their custody from unauthorized access or unauthorized use. Places strict liability on companies where breaches of security allow for personal information to be compromised. Personal information is defined to include biometric information such as DNA. Died.

New York Privacy, Research Statute

Prior informed consent is required to perform a genetic test. Further disclosures require additional consent. For medical research purposes and with approval from an institutional review board and consent, a biological sample may be retained for longer than 60 days and be used for scientific research. Samples may be used for research conducted in accordance with applicable law and regulation and pursuant to a research protocol approved by an institutional review board, if individuals who provided the samples have given prior informed consent for the use of the sample for general research purposes without restrictions, and the samples have been permanently stripped of identifying information or coded to protect the individuals identity. Upon request samples that have not already been used for research must be destroyed. Family members of a research participant may not be contacted without the consent of the individual. Additional provisions address confidentiality, the incorporation of information into medical records, disclosure and penalties for violations.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, surgical or medical to cover screening for ovarian cancer, including genetic testing. Additional coverage is required if genetic testing is positive. Died.

New York Other Topics Died

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. Died.

New York Health Insurance Coverage Pending

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.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Privacy 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. Biometric information, which is defined to include DNA, is considered protected information. Died.

New York Employment Nondiscrimination Enacted

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.

New York Other Topics Died

Establishes an eleven member genetics advisory council. Died.

New York Privacy Died

Establishes the office of data protection and privacy for intelligence data centers to protect the privacy of personal information and biometric identifiers, including DNA. Died.

New York Health Insurance Coverage Pending

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

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of 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.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

New York Employment Nondiscrimination Statute

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

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Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024