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Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

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

    • state statute
    • Massachusetts
    • public health surveillance
    • Research
    • human subjects

  • 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.

    • state statute
    • Massachusetts
    • employment nondiscrimination
    • nondiscrimination
    • genetic information
    • labor organizations
    • employment agencies
    • Massachusetts Commission

  • 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.

    • state statute
    • Massachusetts
    • health insurance nondiscrimination
    • nondiscrimination
    • genetic information

  • 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.

    • state statute
    • Massachusetts
    • disability
    • nondiscrimination
    • genetic information
    • morbidity. actuarial principles
    • genetic testing

  • 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.

    • state statute
    • Massachusetts
    • health insurance nondiscrimination
    • genetic information
    • Diagnosis
    • nongroup health plans

  • Individual accident and sickness policies, individual and group hospital service plans, the group insurance commission plan 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.

    • state statute
    • Massachusetts
    • health insurance coverage
    • genetic testing
    • nondiscrimination
    • Diagnosis
    • autism spectrum disorders
    • autism

  • 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.

    • state statute
    • Massachusetts
    • genetic privacy
    • disability
    • genetic information
    • Consent
    • pharmoco-economic studies

  • 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. Bill Status: Died

    • state bill
    • bill
    • bill status died
    • Michigan
    • health insurance nondiscrimination

  • 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 December 31, 2009. Bill Status: Enacted

    • state bill
    • bill
    • bill status enacted
    • Michigan
    • health insurance nondiscrimination
    • Disease
    • Medicare supplement policies
    • genetic information

  • 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. Bill Status: Died

    • state bill
    • bill
    • bill status died
    • Michigan
    • health insurance nondiscrimination