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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
Massachusetts Health Insurance Coverage Died

This bill requires 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 to provide benefits on a nondiscrminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Accompanied a new draft 2010 H. 4935, which was enacted.

Massachusetts Other Topics Pending

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

Massachusetts Research Statute

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

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Protected characteristics includes genetic information. Carries over 2022.

Massachusetts Health Insurance Coverage Enacted

This bill requires 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 to provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Signed by the Governor August 3, 2010.

Massachusetts Privacy Died

Requires the department of consumer affairs and business to adopt regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Personal information includes biometric indicators (or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry). 6/27/2018 Accompanied a study order, see H4648.

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Carries over to 2022.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

Massachusetts Privacy Died

Prohibits a public agency or public official from: (1) acquiring, possessing, accessing, using, or assisting with the use of or provide resources for the development or use of any biometric surveillance system, or (2) entering into a contract with or making a request to any third party for the purpose of acquiring, possessing, accessing or using information derived from a biometric surveillance system, unless expressly authorized by law. Biometric data is defined to include deoxyribonucleic acid. Died.

Massachusetts Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is 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. Measure failed.

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

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 Privacy Pending

Establishes protections relative to the processing of personal data and the free movement of personal data. Prohibits the processing of genetic data or biometric data for the purpose of uniquely identifying a natural person with certain exceptions. Carries over to 2022.

Massachusetts Research Enacted

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Signed by the Governor 12/19/2014.

Massachusetts Health Insurance Coverage Died

The public employee retirement commission, individual and group accident and sickness insurers, individual or group hospital service plans, individual or group medical service agreements, and individual or group health maintenance contracts must cover colorectal cancer screening as determined medically necessary by a physician. Coverage requirements include KRAS, BRAF, and PIK3CA arrays. 7/18/2018 Accompanied a study order, see H4778.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Massachusetts Other Topics Died

Prohibits any person whose business includes sponsoring, guaranteeing or granting funds or engaging in investment transactions from discriminating against any person in the sponsoring, guaranteeing or granting of funds or making available such funds, because of various factors, including genetic information. 2/27/2020 Accompanied study order. Died.

Massachusetts Privacy Died

Specifies when authorization to disclose health care information is required. Health care is defined to include genetic information. As of June 6, 2014, accompanied by a study order (see H4147).

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

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 Employment Nondiscrimination Enacted

Establishes that it is House policy and practice to assign, promote and compensate employees on the basis of qualifications, merit, and competence. Prohibits employment practices that are influenced or affected by virtue of an applicant's or employee's genetic information. 1/30/2019 Order adopted and published as amended.

Massachusetts Health Insurance Coverage, Other Topics Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality to from engaging in a discriminatory land use practice, including practices based on genetic information. Accompanied a study order, see H5081. Died.

Massachusetts Other Topics Died

Requires that certain state entities make a dedicated effort to encourage diversity and advance equity based on race, color, religious creed, national origin, sex, gender identity, sexual orientation, genetic information, ancestry, disability, and language in any recommendations, policies, programs and initiatives developed. 1/5/2021 In Senate. No further action taken. Died.

Massachusetts Health Insurance Coverage Died

Individual or group policies of accident and sickness insurance, except policies providing supplemental coverage to Medicare or to other government programs, delivered, issued or renewed by agreement within or without the commonwealth must provide coverage for breast cancer screening technology, including, but not limited to, Magnetic Resonance Imaging (MRI) for high risk women. Coverage must be provided not less than once annually to women 25 years and older. High risk women, include, but are not limited to women who test positive for BRCA 1 or 2 or who have one or more first degree relatives that have tested positive for BRCA 1 or 2. Reporting date extended to Thursday July 31, 2014, pending concurrence. Died.

Massachusetts Privacy Pending

Establishes requirements for specified persons, partnerships or corporations that maintain high-risk information systems. A high-risk information system involves the personal information of a significant numbers of consumers regarding various characteristics, including genetic data. Carries over to 2022.

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 Coverage Died

Requires coverage for the diagnosis of Alfi's Syndrome, including genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Massachusetts Other Topics Died

Pertains to municipal master plans. Master plans developed should take into account to the extent feasible ways in which future policies and programs can advance equity based on various factors such as genetic information. Died.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Massachusetts Employment Nondiscrimination Pending

Requires the commission on workplace harassment and sexual assault in the legislature to research and develop model workplace harassment policies for consideration and use by the Senate and House of Representatives. The model policies must address identity-based harassment, including harassment based on genetic information. Carries over to 2022.

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 Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. Died.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the Fiscal Year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

Massachusetts Privacy Died

Amends data security protections to include biometric information, which is defined to include genetic information. 10/26/2020 Accompanied a study order, see H5043. Died.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 11/30/2020 Reported out of Senate Conference Committee. See S2963 for report. Died.

Massachusetts Privacy Died

Ensures patient privacy and control in health information exchanges by protecting health care information, including genetic information. 5/5/2016 Accompanied a study order, see H4242.

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include. Carries over to 2022.

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.

Michigan Health Insurance Nondiscrimination Enacted

Amends the state law pertaining to genetic_discrimination in health insurance. The bill removes the provision in the statutes that states, "This section does not prohibit an insurer of expense-incurred hospital, medical, or surgical policy or certificate to answer questions concerning family history." 7/13/2016 Approved by the Governor.

Michigan Health Insurance Nondiscrimination, Research Died

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. Measure failed.

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 Died

This bill allows a health insurer to request a genetic test as additional information for prior authorization. (See version passed by the Senate). Measure failed.

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 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 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 Died

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

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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