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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 ascending Primary Link Topic(s) Bill Status Summary
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 Health Insurance Coverage 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.

New York Health Insurance Coverage Died

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

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 a insured, applicant or family member of insured or applicant. Measure failed.

New York Health Insurance Coverage Died

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

New York Other Topics 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.

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 Health Insurance Nondiscrimination Died

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.

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 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 Privacy Died

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.

New York Health Insurance Coverage 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.

New York Health Insurance Coverage Died

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.

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 Employment Nondiscrimination Died

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

New York Health Insurance Coverage Pending

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 thereof. Carries over to 2022.

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. 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. Signed by the Governor 12/26/2019.

New York Use of Residual Newborn Screening Specimens Died

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.

New York Employment Nondiscrimination Died

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

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Carries over to 2022.

New York Employment Nondiscrimination Died

Creates a company climate report system to assess the workplace environment of companies doing business in New York. Requires companies to submit biennial climate reports based on an anonymous survey of employees to assess the workplace environment including, but not limited to, pay equity, sexual harassment and discrimination based on various factors, an individual's predisposing genetic characteristics. Died.

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

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. Died.

New York Use of Residual Newborn Screening Specimens Died

Requires parental consent for newborn DNA storage. The bill states that no test, DNA, blood spot, or other genetic information may be retained with an infant's identifying information other than for the purpose of newborn screening without parental consent. Died.

New York Health Insurance Nondiscrimination Died

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.

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. Personal information includes biometric information such as DNA. Died.

New York Privacy Pending

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.

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 Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of people with a family history of cancer when his or her physician determines that there is a significant risk of developing cancer. Measure failed.

New York Employment Nondiscrimination Died

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

New York Privacy Pending

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.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. 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 Use of Residual Newborn Screening Specimens Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died.

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 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 Research Died

Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19.

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 Mexico Health Insurance Coverage Died

An individual or group health insurance policy, health care plan or certificate of health insurance that is delivered or issued for delivery in New Mexico must provide certain benefits that have, in effect, a rating of "A" or "B" in the current recommendations of the United States preventive services task force, for various services, including genetic counseling and evaluation for breast cancer BRCA-gene testing for women whose family histories are associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes. Died in Committee.

New Mexico Employment Nondiscrimination, Privacy Died

Enacts the Uniform Protection of Genetic Information in Employment Act. The bill also amends the Genetic Information privacy Act. Died in Consumer and Public Affairs Committee.

New Mexico Privacy Enacted

This bill amends the Genetic Information privacy Act by adding an exemption for clinical laboratories with regard to consent requirements. A laboratory conducting an analysis or test of a specific individual per a written order from a health care practitioner or the health care practitioner's agent, including by electronic transmission, may obtain, retain, transmit, or use an individual's DNA, genetic information, or test results without the individual's written and informed consent. Signed by the Governor 4/10/2015.

New Mexico Privacy Died

Prohibits the disclosure of sensitive personal information by a state agency employee acquired by virtue of the employee's position with a state agency to anyone outside the state agency except under specified circumstances. Died.

New Mexico Health Insurance Nondiscrimination Enacted

Aligns health insurance law with federal law. Prohibits a group health benefits plan or a health insurance issuer that offers group health_insurance_coverage in connection with a group health benefits plan from adjusting premiums or contribution amounts for the group covered under the plan on the basis of genetic information. April 4, 2019 Signed by Governor - Chapter 259. Effective June 5, 2019.

New Mexico Employment Nondiscrimination Died

Creates the Workplace Harassment Prevention and Education Section of the Human Rights Bureau. The section is responsible for enforcing unlawful workplace harassment policies, including those that pertain to harassment based on genetic information. Died.

New Mexico Employment Nondiscrimination, Other Topics, Privacy Died

Establishes that every person, whether a minor or an adult, has the right of bodily integrity and the freedom to assert that right. A person may not be discriminated agains or denied public accommodation, housing accommodation, employment, government services or any other services offered to the general public or otherwise penalized for the assertion of the right of bodily integrity, including the right not to provide samples of bodily fluids, bodily tissue or genetic material. Died.

New Mexico Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research Statute

The statutes contain provisions on the acquisition, collection, retention, transmission or use of genetic information. Consent requirements provide an exemption (1) if DNA, genetic information or results of genetic analysis are not identified with the person or person's family members or (2) for the purpose of medical or scientific research and education (including retention of gene products, genetic information or genetic analysis if the identity of the person or person's family members is not disclosed.) Discrimination by an insurer against a person or his/her family member based on genetic analysis, genetic information or genetic propensity is prohibited. Life, disability income or long-term care insurance are exempt if use is based on sound actuarial principles or related to actual or reasonably anticipated experience. Upon request a persons genetic information or samples must be promptly destroyed with some exceptions, including if retention is authorized under a research protocol approved by an institution review board pursuant to federal law. It is unlawful for a person to use genetic information in employment or recruiting. A person whose rights under the provisions of the Genetic Information privacy Act have been violated may bring a civil action for damages or other relief.

New Mexico Other Topics Statute

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

New Mexico Employment Nondiscrimination Died

This bill enacts the Uniform Protection of Genetic Information in Employment Act on employee access to genetic information, confidentiality and retention of genetic information and disclosure of genetic information. Measure failed.

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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