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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 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 Enacted

Directs the director of the office of information technology services 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 of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence. 1/25/2021 Substituted by A954. 1/28/2021 Signed by the Governor. Effective immediately.

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 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 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 Other Topics Died

Establishes an eleven member genetics advisory council. Died.

New York Other Topics Enacted

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. 4/20/2017 Signed by the Governor Chapter 58.

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 Privacy Pending

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.

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 Other Topics Enacted

Prohibits the state, or any agency or bureau, or any other entity from denying a refugee resettlement anywhere within the state based on any criterion, method of administration, or practice that has the purpose or effect of discriminating on the basis of various factors, including predisposing genetic characteristics. 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. Provisions include that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

New York Health Insurance Nondiscrimination Died

This bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

New York Privacy Died

Establishes the It's Your Data Act to provide protections and transparency in the collection use retention and sharing of personal information. Personal information is defined to include biometric information such as a DNA sequence. Referred to Rules 10/28/2020. Died.

New York Privacy 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 Research Died

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died.

New York Privacy Enacted

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.

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 Employment Nondiscrimination, Other Topics Pending

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.

New York Health Insurance Nondiscrimination 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.

New York Health Insurance Coverage Died

Provides insurance coverage for colonoscopies for individuals 45 or older based on risk factors, including genetic history. Died.

New York Privacy Died

Requires written notification to parents of infant's whose DNA or blood spots are retained. Died.

Displaying 851 - 875 of 1160

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