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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
Michigan Health Insurance Nondiscrimination Died

An insurer may specify in writing the materials and information necessary to constitute a properly completed standard prior authorization request. The request may include patient clinical information, including, but not limited to diagnosis, chart notes, lab information, and genetic tests. Died.

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 Privacy Died

This bill requires the Department of Community Health to develop a model written, informed consent form for genetic testing. Health care professionals must have test subjects complete the form prior to ordering genetic testing. Died.

Michigan Privacy Died

Amends the state genetic privacy law. Changes in introduced version of bill only involve unsubstantial changes in wording of text. Died.

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 Employment Nondiscrimination Died

Requires employers of 50 people or more to post a notice that it is illegal under federal law to pay employees different wages for the same work based on certain criteria, including genetic information. Died.

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 Employment Nondiscrimination Died

Requires employers of 50 people or more to post a notice that it is illegal under federal law to pay employees different wages for the same work based on certain criteria, including genetic information. Died.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

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 Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

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 Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Minnesota Other Topics Died

Establishes a pharmacogenetics task force. Died.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022 session.

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 Died

This bill amends the definition of genetic test in the statutes regarding government data practices. Measure failed.

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

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 Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill specifies that newborn screening activities are subject to state law on the collection, storage, use, and dissemination of genetic information. A new statute section also is created on the treatment of biological specimens and health data held by the health department and health boards. The new statute section allows the commissioner to 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. Died.

Minnesota Privacy Died

Establishes requirements with regard to collection, sale of, and access to personal information by businesses. Personal information is defined to include genetic information. Died.

Minnesota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill modifies the definition of genetic test under the Genetic Insurance Discrimination Act and adds a new section restricting the use of genetic information in individual and group life, disability income and long-term care insurance. For underwriting and ratemaking purposes, these insurers may not request or require a genetic test, use genetic test results other than those in the medical record or use genetic test results in the medical record without claims experience, substantial data or actuarial justification. Measure failed.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making pharmacogenomics available statewide. Carries over to 2022 session.

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 Use of Residual Newborn Screening Specimens Died

The original version of this bill amended the newborn screening law pertaining to storage of blood samples. All language was subsequently deleted pertaining to the newborn screening program.

Minnesota Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Minnesota Privacy Enacted

Relates to consumer data privacy. Establishes business obligations regarding: (1) collection and disclosure of personal information; and (2) sale of personal information to third parties. Gives various rights to consumers regarding personal data. Personal information includes biometric information such as genetic information. Carries over to 2022 session.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.
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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 Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

Minnesota Privacy Died

The controller of a legal entity that conducts business in the state may not process sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of the processing of personal data concerning a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Sensitive data is defined to include genetic or biometric data for the purpose of uniquely identifying a person. The law does not apply to various types of information and entities such as protected health information under HIPAA and identifiable private information according to federal policy for the protection of human subjects. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Minnesota Health Insurance Nondiscrimination, Research Enacted

This bill applies to insurers that provide Medicare supplement policies or certificates only. Denying or conditioning the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information is prohibited. These 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. Approved by the governor May 22, 2009.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022 session.

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 Other Topics Died

Establishes a genetic marker testing pilot program. The program is intended to refine the understanding of disease onset and progression, treatment response, and health outcomes through more precise measurement of genetic factors that contribute to health and disease. Died.

Minnesota Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

Minnesota Privacy Died

This bill adds third generation pedigrees to health data protections that apply to the state health department. This bill also requires government entities to obtain written informed consent to collect genetic information and human biological specimens. Consent must include the purpose for collection, the length of retention, and any dissemination outside the organization that will occur. Measure failed.

Minnesota Use of Residual Newborn Screening Specimens Enacted

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. Signed by the Governor on May 10, 2012.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.

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.

Minnesota Health Insurance Nondiscrimination Died

A managed care organization that contracts with the health commissioner cannot discriminate or use any policy that has the effect of discriminating against people on the basis of genetic information. Died.

Minnesota Privacy Died

Establishes the Minnesota Consumer Data privacy Act. Gives various rights to consumers regarding personal data. Personal data includes the processing of genetic or biometric data for the purpose of uniquely identifying a person. Places obligations on businesses regarding consumer data. Died.

Minnesota Privacy Died

This bill amends the definition of genetic information and creates a new section of the state genetic privacy law to separate the provisions that apply to government entities versus any person. The requirements imposed on government entities and any person with respect to written informed consent and appropriate use of genetic information are identical. Measure failed.

Minnesota Privacy Enacted

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. March 21, 2013 Approved by the Governor.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

Minnesota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

A health plan company in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision may not (1) require or request an individual or his or her blood relative to take a genetic test, (2) make any inquiry about a genetic test or what the results of any such test were, or (3) take into consideration the fact that a genetic test was taken or refused or the results of such a test. A life insurance company or fraternal benefit society requiring a genetic test for the purpose of determining insurability for life insurance must obtain informed written consent. A violation is subject to the investigative and enforcement authority of the insurance commissioner.

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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