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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 Hampshire Privacy Enacted

The introduced version of the bill sought to protect confidential and sensitive information such as genetic testing information. The bill has been amended to establish a committee to study the use and regulation of biometric information. Signed by the Governor on 5/15/2018. Effective 5/15/ 2018.

New Hampshire Privacy Died

Declares that an individual's genetic information and DNA sample are the property of the individual. Committee Report: Referred to Interim Study, 05/05/2016.

New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

New Hampshire Privacy Died

Provides that an individual has an expectation of privacy in personal information, including DNA/RNA and other identifying information unique to the individual. Died.

New Hampshire Use of Residual Newborn Screening Specimens Statute

Samples may not be used for other research or DNA testing purposes unless authorized by the parent or guardian.

New Hampshire Privacy Died

Prohibits the collection, tracking, housing, storage, reporting or sharing of personally identifiable information with the federal government or for-profit corporations. The findings and purpose section of the bill lists a DNA sequence as private student data. Died on the Table.

New Hampshire Privacy Statute

No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute.

New Hampshire Privacy 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.

New Hampshire Privacy Statute

No individual or his/her family member may be required to undergo genetic testing as a condition of doing business with another person. Genetic testing may not be performed on any individual or anywhere on any resident of the state based on bodily materials obtained within the state without prior written and informed consent with some exceptions. Additional provisions address disclosure of results. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

New Hampshire Privacy Died

Prohibits the government from acquiring, retaining, collecting, or using personal information without express written consent with some exceptions such as if a warrant has been issued. Personal information includes DNA/RNA. Died.

New Hampshire Employment Nondiscrimination Statute

No employer, labor organization, employment agency, or licensing agency may (1) solicit, require or administer genetic testing, or (2) affect the terms, conditions, or privileges of, or terminate employment, membership, or licensure based on genetic testing. A person may not sell or provide to these entities any genetic testing relating to an existing or prospective employee, member or licensee unless for the purpose of workers compensation or biomonitoring of workplace toxins and with informed consent. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Privacy Died

Adds biometric information to the Consumer Protection Act. Died.

New Hampshire Health Insurance Nondiscrimination Statute

A health insurer in connection with providing health insurance may not (1) require or request an individual or family member to undergo genetic testing, whether a test was taken or the results of the testing, (2) condition the provision of health_insurance_coverage or health care benefits on whether an individual or family member has undergone genetic testing or the results of the testing, or (3) consider in the determination of rates or any other aspect of health_insurance_coverage or benefits whether an individual or family member has undergone genetic testing or the results of the testing. The statutes establish a right to civil action by aggrieved individuals.

New Hampshire Privacy Died

When an individual consents to receive assistance from a health or social service agency in the state, the consent given to the initial health or social service agency to use the individual's personal information may not be transferred to or retained by any other health or social service agency, network, or entity. No health or social service agency in the state may require a individual's consent to share personal information with another health or social service agency in the state or another state as a prerequisite for such individual to receive services from such health or social service agency, including consent to share details regarding which health or social service agency the individual has received help from in the past and associated information related to that interaction. A health or social service agency must explicitly and in writing inform any individual seeking such assistance that lack of consent will not affect the individual's ability to receive health or social services from the agency and that the individual will not be otherwise penalized. Personal information is defined to include DNA. Hearing on 2/08/2021. Carries over to 2022.

New Hampshire Other Lines of Insurance Nondiscrimination Statute

A person in the business of providing life, disability income, or long-term care insurance who obtains information about genetic testing of an individual or a family member may not use that information in writing a type of insurance coverage other than life, disability income, or long-term care insurance. An aggrieved individual may bring a civil action.

New Hampshire Research Died

The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table.

New Hampshire Privacy Died

This bill restricts the collection of biometric data, including DNA or RNA, by state agencies, municipalities, and political subdivisions. Died.

New Jersey Coverage and reimbursement Introduced

Requires health insurers to cover additional mammogram examinations and genetic testing and counseling under certain circumstances.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New Jersey Employment Nondiscrimination Died

Creates the State Anti-Harassment and Workplace Discrimination Act. Declares that it is an unlawful employment practice and unlawful discrimination, for any person, whether an employee or applicant for employment, or intern or volunteer, in any State agency or Gubernatorial Transition Office, or person doing business with the State to discriminate against or harass an employee or applicant for employment, or intern or volunteer, based upon certain protected categories, genetic information. Died.

New Jersey Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

No person may discriminate against an individual based on genetic information or the refusal of a genetic test with respect to hospital confinement or other supplemental limited benefit insurance. No person may make or permit any unfair discrimination against an individual in the application of the results of a genetic test or genetic information with respect to life insurance, including credit life insurance, an annuity, disability income insurance contract or credit accident insurance coverage, and, if results of a genetic test as permitted by these entities, the insurer must notify the individual who is the subject of the test that it is required and obtain the individual's prior written informed consent. The insurance commissioner has the authority to enforce these provisions.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New Jersey Privacy, Research Statute

A person may not (1) obtain genetic information from an individual or from an individual's DNA sample or (2) retain an individuals genetic information without prior informed consent with some exceptions, including for anonymous research where the identity of the subject will not be released. A DNA sample from an individual who is the subject of a research project must be destroyed promptly upon completion of the project or withdrawal of the individual from the project unless consent to retain the sample is provided. Additional provisions address retention and disclosure. The statutes set forth civil and criminal penalties for violations.

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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