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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 Primary Link Topic(s) Bill Status Summary
Maryland Health Insurance Nondiscrimination, Privacy, Research Statute

An insurer, nonprofit health service plan, or health maintenance organization, which does not include life insurance policies, annuity contracts, long-term care insurance policies, or disability insurance policies, may not (1) use a genetic test, the results of a genetic test, genetic information, or a request for genetic services to affect a health insurance policy or contract, (2) request or require a genetic test, the results of a genetic test, or genetic information for certain purposes, or (3) release identifiable genetic information or the results of a genetic test except for internal business and to a participating health care provider without prior written authorization. Disclosure of identifiable genetic information to an employee or authorized health care provider may only be for the purpose of providing medical care to patients or conducting research approved by an institutional review board established in accordance with federal law. The insurance commissioner has the authority to issue orders where a violation is found.

Maryland Health Insurance Nondiscrimination Statute

Prohibits health insurers, health maintenance organizations, nonprofit health insurance plan or any person or organization that provides health benefits plans from excluding or limiting certain benefits or denying certain coverage based on a health-status related factor, including genetic information. Health status-related factors also may not be used to (1) cancel or refuse to renew a small employer group plan or individual health plans; (2) establish rules for eligibility; or (3) charge higher premiums than similarly situated individuals in a group health plan.

Maryland Privacy Statute

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Not effective until 10/1/2024.

Maryland Employment Nondiscrimination, Privacy Statute

An employer may not (1) discriminate against any individual because of genetic information or because of an individuals refusal to submit to a genetic test or provide the results of a genetic test, (2) limit, segregate, or classify its employees or applicants because of genetic information or the individual's refusal to submit to a genetic test or provide the results of a genetic test, or (3) request or require a genetic test as a condition of hiring or determining benefits.

Maryland Employment Nondiscrimination Statute

Prohibits the Washington Suburban Sanitary Commission from discriminating against a person on the basis of genetic information. Requires that contracts entered into by the Commission include a provision stating that contractors will not to discriminate in any manner against an employee or an applicant for employment based on a variety of factors, including genetic information.

Massachusetts Research Statute

Any public health surveillance activity which is also research is subject to the requirements for research using human subjects.

Massachusetts Employment Nondiscrimination Statute

An employer may not discriminate against an individual in compensation or in terms, conditions or privileges of employment, unless based upon a bona fide occupational qualification, because of genetic information. The statutes include nondiscrimination provisions that apply to other entities, including but not limited to labor organizations and employment agencies. The Massachusetts Commission against discrimination investigates complaints of unfair discrimination based on genetic information.

Massachusetts Health Insurance Nondiscrimination Statute

A health maintenance organization, company, insurance broker, medical service corporation, non-profit hospital service corporation or preferred provider organization may not cancel, refuse to issue or renew, or make any distinction or discrimination in the amount of payment of premium or rates charged, in the length of coverage or in any of the terms and conditions based on genetic information. These entities may not require genetic tests or private genetic information.

Massachusetts Other Lines of Insurance Nondiscrimination Statute

An insurer, agent or broker authorized to issue life insurance policies, policies against disability from injury or disease or policies for long-term care may not practice unfair discrimination because of the results of a genetic test or the provision of genetic information or require an applicant to undergo a genetic test as a condition of issuance or renewal of a policy. Unfair discrimination involves discriminatory practices against persons unless such action is based on reliable information relating to the insureds mortality or morbidity and based on sound actuarial principles or actual or reasonably anticipated claim experience. These insurers may ask if an applicant has taken a genetic test.

Massachusetts Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis under the definitions for chapter 176M on nongroup health plans and 176J on small group health insurance.

Massachusetts Health Insurance Coverage Statute

Individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract must provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing.

Massachusetts Other Lines of Insurance Nondiscrimination, Privacy, Research Statute

Genetic information contained in reports or records held by hospitals, laboratories, physicians, insurance institutions and others named in the statute may not be divulged without informed written consent with some exceptions, which include in connection with life, disability, and long term care insurance, as allowable, or as confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Additional provisions concerning the performance of genetic tests apply to laboratories and other facilities. Organizations conducting pharmoco-economic studies in systematic research to determine the cost benefits of specific treatment for genetic based disease are exempt from the need to re-obtain informed consent. A person whose rights have been violated may bring a civil action.

Michigan Use of Residual Newborn Screening Specimens Statute

The statute requires the health department to develop a schedule for the retention and disposal of blood specimens. The schedule must allow for the blood specimens to be used for medical research during the established retention period, as long as the medical research is conducted in a manner that preserves the confidentiality of the test subjects and is consistent to protect human subjects from research risks under subpart A of part 46 of subchapter A of title 45 of the code of federal regulations.

Michigan Health Insurance Nondiscrimination, Privacy Statute

The law requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests.

Michigan Employment Nondiscrimination Statute

An employer may discriminate against an individual because of genetic information that is unrelated to the individual's ability to perform the duties of a particular job or position. An employer also may not require an individual to submit to a genetic test or provide genetic information as a condition of employment or promotion. An employee may voluntarily submit genetic information that is relevant to health and safety in the workplace, and an employer may use genetic information submitted for that purpose.

Michigan Health Insurance Nondiscrimination, Privacy Statute

Insurers that provide Medicare supplement policies or certificates only may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. Insurers of these policies or certificates may not (1) discriminate with respect to pricing on the basis of genetic information, (2) request or require an individual or family member to undergo a genetic test (with an exception regarding requesting a test), or (3) use the manifestation of disease in an individual as genetic information about another group members and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met.

Michigan Privacy Statute

A physician or individual to whom a physician has delegated authority must obtain informed written consent to order a pre-symptomatic or predictive genetic test. Required contents of the informed consent form are specified, and the department of community health with others must develop a model consent form, which, if used, bars the test subject from bringing any civil action for damages based on failure to obtain consent. The public health department may investigate activities thought to be in violation of the law and report its findings by to the appropriate disciplinary subcommittee.

Michigan Health Insurance Nondiscrimination Statute

An expense-incurred hospital, medical, surgical policy or certificate or health care corporation may not require an insured or his or her dependent or an asymptomatic applicant or his or her asymptomatic dependent to undergo a genetic test or disclose whether a genetic test has been conducted, the results of a genetic test or genetic information.

Minnesota Privacy, Use of Residual Newborn Screening Specimens Statute

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

Minnesota Use of Residual Newborn Screening Specimens Statute

During the period in which residual newborn screening specimens is retained, the health department may use blood samples and test results for newborn screening program operations. Newborn screening operations are defined to specifically exclude research, public health studies, or the development of new newborn screening tests.

Minnesota Privacy, Research Statute

The health commissioner may collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection of human subjects in Code of Federal Regulations, title 45, part 46. Biological specimens is defined as tissue, fluids, excretions, or secretions that contain human DNA originating from an identifiable individual, either living or deceased.

Minnesota Other Topics, Privacy Statute

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of �13.386 of the statutes pertaining to genetic privacy.

Minnesota Employment Nondiscrimination Statute

Employers or employment agencies may not administer a genetic test or request, require, or collect protected genetic information as a condition of employment or affect the terms or conditions of employment or terminate the employment of any person based on protected genetic information. A person may not provide or interpret genetic information on a current or prospective employee for an employer or employment agency. An aggrieved person may bring a civil action.

Minnesota Health Insurance Nondiscrimination, Research Statute

An issuer of a Medicare supplement policies or certificates may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. These entities also may not discriminate with respect to pricing on the basis of genetic information; request or require an individual or family member to undergo a genetic test; or use the manifestation of disease in an individual as genetic information about another group member and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met.

Minnesota Health Insurance Nondiscrimination, Privacy Statute

The law requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act.

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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